Work Disability Among People With Lupus

Being unable to work has a profound impact on chronically ill people and their families. Self esteem, socializing with peers, current income, and retirement assets can all be greatly reduced when a person becomes work disabled. Arthritis Foundation-funded researcher Ed Yelin, PhD, and his team at University of California, San Francisco, assessed the work patterns of people with systemic lupus erythematosus (SLE or lupus) at diagnosis and several years after diagnosis.What Problem Was Studied?Because lupus often begins at a fairly young age, during a person’s career-building phase of life, those people have a lot to lose if they cannot work.

If diagnosed at age 30 and work disabled by age 35, a person with lupus may lose up to 30 years of income and have no money saved for retirement. To determine the levels of work disability and characteristics of people who become disabled, Dr. Yelin and team studied a large group of people with lupus over a number of years.What Was Done In the Study?Participants of a genetic study of lupus were recruited for the Lupus Outcomes Study (LOS). Of those in the genetics study, 982 enrolled in the LOS and answered questions to an initial interview. One year later, 832 of the participants answered the same questions again. The survey gathered data about the following:
demographics and socioeconomic status – age, sex, ethnicity, education, income;

SLE status – disease activity, disease manifestations;
general health – height and weight, smoking status, diseases other than lupus;
mental health – depression, cognitive function, stress;
health insurance – type of coverage, copayments, drug coverage;
health care utilization – number of doctor visits, medications taken, hospitalizations; and
employment – if working, number of hours per week, number of weeks per year, occupation, demands of job.

What Were the Study Results?The LOS participants had lupus for an average of ~12 years. Overall, 74% had been employed in the year of diagnosis, declining to 55% at the time of the first LOS interview and to 54% a year later at the second LOS interview. Among participants who had ever been employed, hours worked per week declined by ~35% between the year of diagnosis and the second interview; weeks worked per year declined by ~24%; and total hours worked per year declined by ~32%. By 5 years after diagnosis, 15% had stopped working; by 10 years, ~36%; by 15 years, 51%; and by 20 years, 63% had stopped working. These numbers represent a much lower employment rate than a similar group without SLE.

What Does This Mean For People With Lupus?Among these people with lupus, diagnosis occurred in their mid-30s. More than half of those lost 20 years of earning potential. As Dr. Yelin notes in the article’s summary “Because much of the accrual of retirement savings occurs in these last two decades of a career, after one’s responsibilities to one’s children have passed, persons with SLE will have to face retirement with a much greater risk of poverty.” This grim reality brings to the forefront a need for occupational therapy and work maintenance programs that can help people with chronic diseases remain in the workforce. To reduce employment loss, Dr. Yelin recommends, “People with SLE must work with their employers to receive the job accommodations that are their due under the Americans with Disabilities Act (ADA). In particular, flexible work schedules have proven helpful so that those with serious illnesses can fit their illness episodes and need to obtain health care in and around work activities.”

Yelin E, Trupin L, Katz P, et al. Work dynamics among persons with systemic lupus erythematosus. Arthritis Rheum (Arthritis Care Res) 2007;57:56-63.

=========================================================== This information is for"informational purposes" and is not meant to be used for medical diagnosis. Always consult your physician on matters such as this.

What Are The Four Types of Lupus?

There are four types of lupus: discoid, systemic, drug-induced and neonatal lupus.

Discoid
Discoid (cutaneous) lupus is always limited to the skin. It is identified by a rash that may appear on the face, neck, and scalp. Discoid lupus is diagnosed by examining a biopsy of the rash. In discoid lupus the biopsy will show abnormalities that are not found in skin without the rash. Discoid lupus does not generally involve the body's internal organs. Therefore, the ANA test may be negative in patients with discoid lupus. However, in a large number of patients with discoid lupus, the ANA test is positive, but at a low level or "titer."

In approximately 10 percent of patients, discoid lupus can evolve into the systemic form of the disease, which can affect almost any organ or system of the body. This cannot be predicted or prevented. Treatment of discoid lupus will not prevent its progression to the systemic form. Individuals who progress to the systemic form probably had systemic lupus at the outset, with the discoid rash as their main symptom.

Systemic
Systemic lupus is usually more severe than discoid lupus, and can affect almost any organ or organ system of the body. For some people, only the skin and joints will be involved. In others, the joints, lungs, kidneys, blood, or other organs and/or tissues may be affected. Generally, no two people with systemic lupus will have identical symptoms. Systemic lupus may include periods in which few, if any, symptoms are evident ("remission") and other times when the disease becomes more active ("flare"). Most often when people mention "lupus," they are referring to the systemic form of the disease.

Drug-Induced
Drug-induced lupus occurs after the use of certain prescribed drugs. The symptoms of drug-induced lupus are similar to those of systemic lupus. The drugs most commonly connected with drug-induced lupus are hydralazine (used to treat high blood pressure or hypertension) and procainamide (used to treat irregular heart rhythms). Drug induced lupus is more common in men who are given these drugs more often. However, not everyone who takes these drugs will develop drug-induced lupus. Only about 4 percent of the people who take these drugs will develop the antibodies suggestive of lupus. Of those 4 percent, only an extremely small number will develop overt drug-induced lupus. The symptoms usually fade when the medications are discontinued.

Neonatal
Neonatal lupus is a rare condition acquired from the passage of maternal autoantibodies, specifically anti-Ro/SSA or anti-La/SSB, which can affect the skin, heart and blood of the fetus and newborn. It is associated with a rash that appears within the first several weeks of life and may persist for about six months before disappearing. Congenital heart block is much less common than the skin rash. Neonatal lupus is not systemic lupus.


=========================================================== This information is for"informational purposes" and is not meant to be used for medical diagnosis. Always consult your physician on matters such as this.

Fertility Preserved in Women With Severe Lupus

Ovarian function can be preserved and disease activity controlled in women with severe systemic lupus erythematosus (SLE; lupus) when treated with a 6-month course of cyclophosphamide (CYC), a chemotherapy drug, followed by the immunosuppressant mycophenolate mofetil (MMF), according to a new study presented at the Annual Congress of the European League Against Rheumatism. Lupus is most common among women and, although long-term survival has dramatically improved over time with better diagnosis and treatment options, one of the challenges in managing the disease is to minimize the side-effects of treatments such as the disruption of ovarian function and risks to fertility.

Pulsed intravenous CYC is a standard therapy for SLE but may also be associated with ovarian failure in addition to other adverse effects.Dr. Katerina Laskari, the presenting author of the study, led by Professor Athanasios G. Tzioufas in the Department of Pathophysiology of the National and Kapodistrian University of Athens, said: "Although the prognosis for people with SLE has considerably improved over the years, a patient's quality of life can all too often be seriously impaired by the toxicity of many commonly used treatments. Preserving ovarian function is a very important consideration in treating women with SLE of child-bearing age, who are already burdened by the difficult nature and impact of the disease itself."

This article was adapted from a press release issued by EULAR.

=========================================================== This information is for"informational purposes" and is not meant to be used for medical diagnosis. Always consult your physician on matters such as this.

Poverty & Lupus

It is a well-established fact that poor people with chronic disease have poorer outcomes than well-off people with chronic disease. People with lupus have not been able to escape this reality. Research in diseases other than lupus has shown that characteristics of the neighborhood in which people live can also affect a person’s health. For example, studies done by sociologists have shown that living in a poverty-stricken area accentuates the negative effects of being poor yourself.

What Problem Was Studied?
Because of the results of the sociological research, health science researchers – led by Laura Trupin, MPH, and including Arthritis Foundation-funded scientists Jinoos Yazdany, MD, MPH, Lindsey A. Criswell, MD, and Edward Yelin, PhD – decided to examine the joint effects of personal poverty and neighborhood poverty on the health of people with systemic lupus erythematosus (SLE; lupus).

What Was Done in the Study?
The team from University of California, San Francisco, used data from the Lupus Outcomes Study to determine the contribution of neighborhood socioeconomic status (SES) to lupus outcomes over and above the contribution of individual SES. Individual SES was determined using three measurements: educational attainment, annual household income and poverty level. Participants were considered to be living in poverty if their income and number of people in the house put them at or below 125 percent of the federal poverty threshold. For a family of four, this translated to an annual income of less than $23,000.Neighborhood SES was determined by the percentage of households in a neighborhood living at or below 125 percent of the federal poverty threshold. If 30 percent of households are below that level, the neighborhood is considered a high poverty area.As well as obtaining this economic information, the research team also gathered data on the participants’ health. For this study, they measured disease activity, overall physical functioning and symptoms of depression.

What Were the Study Results?
After adjusting for confounding variables, lower education, lower income and poverty all were associated with higher disease activity, poorer physical function and more depression. Likewise, living in a high poverty area was also associated with greater lupus activity, poorer physical function and higher likelihood of depression. When evaluating the simultaneous effect of low individual SES and high levels of neighborhood poverty, however, neighborhood poverty had an adverse impact on only the mental health of people with lupus. Of participants who were personally poor and lived in a poor neighborhood, 76 percent had clinically significant depression, whereas just 32 percent of those who were neither poor nor lived in a poor area had scores indicative of depression.

What Does this Mean for People With Lupus?
Other studies have found that living in a poor neighborhood – even if you yourself are not poor – is linked to greater morbidity and mortality. This study did not confirm that to be the case in people with lupus. The authors do conclude, “However, our finding that community poverty is independently associated with increased rates of depressive symptoms suggests that, in this group of individuals facing the challenges of a potentially severe and complex disease, living in a poor community further jeopardizes mental health status.” Because depression is a distinct manifestation of lupus, indeed a symptom of the disease, the risk for a poor outcome is even greater when poverty compounds the situation. The research team will now turn its attention to uncovering the reasons why the combination of personal and community poverty has such an adverse effect on the mental well-being of persons with lupus. One hypothesis to be tested is that neighborhoods with high concentrations of poor people are stressful places to live because of crime rates and poor access to health care professionals.

Trupin L, Tonner MC, Yazdany J, et al. The role of neighborhood and individual socioeconomic status in outcomes of systemic lupus erythematosus. J Rheumatol 2008; e-pub ahead of print July 15.

=========================================================== This information is for"informational purposes" and is not meant to be used for medical diagnosis. Always consult your physician on matters such as this.

Lupus Caregivers - Another Perspective

Tomiko Fraser and her younger sister, Shneequa, can still communicate, although it is often a struggle. Shneequa, who was diagnosed with lupus seven years ago, has suffered brain damage and can't always come up with the right words.

"My sister has a special language that she uses,” says Tomiko. “For instance, for some reason she refers to the color ‘black’ as the number ’10’ and ‘green’ is the number ‘4.’"
Understanding the code words, combined with hand gestures makes it possible for the sisters to stay close and share each other’s thoughts and feelings.

As a model for Maybelline, an actress, and a spokesperson for the Lupus Foundation of America, Tomiko is surrounded by the glamour that accompanies today’s top models. But, as Shneequa’s guardian and primary caregiver, Tomiko often has to make the glamorous life less of a priority.
For many years, her sister lived in a nursing home on Long Island, New York, and Tomiko, who lives in Los Angeles, was only able to see her about once every month. That all changed last year.
"I became [my sister’s] guardian in December 2003 and finally moved her to a facility in Los Angeles where she has wonderful medical care," says Tomiko. "Now I'm able to see her at least three or four times every week."

Tomiko is just one of millions who each year take on the role of caring for an adult family member or friend who is ill or disabled. It is estimated that more than 50 million people in this country become caregivers.

Shouldering Responsibility
Taking care of a loved one can include a range of activities, from mundane to demanding, from driving the person to a doctor’s appointment or helping with bathing, feeding, and dressing. Also, the task of managing a loved one’s financial and legal matters may fall on the shoulders of the caregiver. Caregiving can be very much like a full-time job—but one that does not come with a paycheck. While the care provided by caregivers is unpaid, at the value has been estimated to be $257 billion a year, according to the National Family Caregivers Association.

Although the value of caregivers can never be disputed, the role often takes an incredible toll on those who take it on. Caregivers can experience emotional stress, physical strain, and financial hardships as they try to balance their roles as caregivers with their other obligations. And often, striking that balance is a heavy task.

Suddenly becoming a caregiver can be hard for anyone. But imagine the difficulty of becoming a primary caregiver at the age of 14 for a mother who has just been diagnosed with lupus.
That’s precisely what happened a decade ago to Michelle Snow. The oldest of five children, Snow found herself taking on the responsibility for cooking and cleaning and getting her mother to her medical appointments.

“I was driving before I even had a license,” says Snow, who today plays for the Houston Comets, a Women’s National Basketball Association team. “I drove my mother to her chemotherapy appointments and took her to dialysis and for other medical appointments.”
Much of the responsibility fell on Snow’s shoulders because, as she puts it, “My father worked from sunup to sundown.”

It was a huge challenge, says Snow, whose mother passed away in the spring of 2004 “We’re not taught how to deal with caregiving, and some children do lose their childhood,” she says.

Self Health
Even the strongest and most determined adult can become overwhelmed by the responsibilities of taking care of someone with a chronic disease. So it is of primary importance for caregivers to take care of their own health as lovingly as they do their family member.

LeAnn Thieman, co-author of Chicken Soup for the Caregiver’s Soul, advises taking care to balance your life physically, mentally, and spiritually. That translates into paying attention to your diet, getting enough exercise, and setting aside a few minutes every day for quiet and reflection.

“We pay so much attention to the person we are caring for we forget to take care of ourselves,” says Thieman. “Often caregivers feel alone and unappreciated. They have to understand that caring for themselves is as important as providing care for others.”

Learn as You Care
One of the best tips for caregivers is to learn as much about the disease as they can. “You might think that you do not want to know, but if you are educated, you’ll find a way to deal with things,” says Suzanne Mintz, president and co-founder of the National Family Caregivers Association.

Mintz, whose husband has multiple sclerosis, has four guiding lights for family caregivers:

• Choose to take charge of your life.
• Love, honor, and value yourself.
• Seek, accept and, at times, demand help.
• Be an activist for your disease.

Mintz echoes Thieman and Forte on the importance of looking at the situation from the “glass-is-half-full” viewpoint.

“We really can choose our attitude,” says Mintz. If you focus on the bright side, whether that be the great research on the horizon or you’ve found a wonderful doctor, caregivers will find that an inner strength that they weren’t aware of.

Mintz’s second principle is to take care of yourself, both physically and mentally: get the massage or arrange for lunch and a movie with a friend. Caregivers have a right to do things for themselves and if they don’t take care of themselves, they’ll end up becoming very bitter. Being a martyr is not going to benefit anyone, Mintz points out.

Mintz also advises that caregivers bear in mind that they can’t do it all. “People don’t realize that there has never been a phenomenon like this,” she says. “In 1900 the average life expectancy was 47 years. It used to be that people died from infections or diseases in a short period of time,” whereas today they can live for years with Alzheimer’s or heart disease, so the role of caregiver can be significantly longer than just a couple of months. As a result, the demands on long-term caregivers may be significantly greater than in the past and the toll it can take on their own careers, health, and well-being can be significant.

Seek Support
It’s normal for the strains of caregiving to cause feelings of being overwhelmed, depressed, or discouraged. Considering this, it’s crucial for caregivers to build a support system— whether it consists of paid services, help from friends and neighbors, or members of one’s church or synagogue.

John Forte, whose wife Carole was diagnosed with lupus nine years ago, recommends seeking professional help if the feelings become too much to handle. “Virtually all the caregivers I know have sought mental health counseling for exhaustion, or depression, or because they are getting older and not able to do as much physically as they once were,” he says. Judith Sheagren, D.S.W., a psychotherapist and psychoanalyst in Baltimore, confirms Forte’s point of view.

“I see people all the time who are struggling with their guilt about taking any time for themselves and who feel bad because they are not devoting every minute to a family member who is less fortunate,” she says. “When one feels that she is losing touch with her own life, it really can be beneficial to sit down with a mental-health professional and see what limits need to be set to reclaim one’s life.

“It’s important not to give so much of yourself that there is nothing left for you.”
Support groups are also a rich source of help. “The benefit of a support group is knowledge and having the chance to share information with others,” continues Forte. “These are people who understand what you are going through with doctors and medications and struggling through our very complex medical system.”

Not surprisingly, Forte has been asked more than once: “I can find everything I need on the Internet, so why should I bother attending a support group?” One powerful reason, Forte points out, is that "the computer is not going to reach out and give anyone a hug, a pat on the back, or a shoulder to cry on.”

Of course, even caregivers who themselves have a good support system in place need to be realistic and acknowledge that it is normal to become discouraged. “I get discouraged all the time,” says Tomiko Fraser. “I question why I am the one in my family who was ‘chosen’ to take care of my sister. Still, while taking care of her and being her legal guardian has been an undertaking, I wouldn’t have it any other way. I’d advise other caregivers to try to be strong and have a lot of patience, as well as a heart full of love. I'm trying to keep her quality of life as pleasant as possible ... what keeps me going is my love for her.”

The Advocate’s Role
Finally, Mintz recommends that caregivers must become both activists and advocates. Advocates seek answers to questions, especially when it comes to navigating the health care system, while activists work to make sure that elected officials understand what is expected of them. Tomiko knows about lupus advocacy firsthand and works tirelessly to raise awareness of the disease.

“Since I am a spokesperson for the Lupus Foundation, I make appearances on foundation's behalf, whether that means speaking before Congress or in special events,” she says. “When I'm being interviewed because of my acting or my modeling, I always try to work into the interview what the foundation does, what the disease is and what my role as a spokesperson includes.
“In spite of the difficulties involved in taking care of my sister, what I do for her is nevertheless very important and is very rewarding for me.”

It is a sentiment with which most caregivers would wholeheartedly agree.

Article provided through the Lupus Foundation of America, Inc.

=========================================================== This information is for"informational purposes" and is not meant to be used for medical diagnosis. Always consult your physician on matters such as this.

The History of Lupus Erythematosus

Marc C. Hochberg, MD, MPH
Professor of Medicine, Epidemiology and Preventive Medicine University of Maryland School of Medicine, Baltimore, MD.A selection from the Lupus Foundation of America Newsletter Article Library93-102Revised 6/03

The history of lupus erythematosus (LE) has been reviewed in two of the major textbooks on this disease1,2 and was the subject of an article in a journal in 1983.3 This article concentrates on developments in the present century which have greatly expanded our knowledge about the pathophysiology, clinical-laboratory features, and treatment of this disorder.

The history of lupus can be divided into three periods: the classical period which saw the description of the cutaneous disorder, the neoclassical period which saw the description of the systemic or disseminated manifestations of lupus, and the modern period which was heralded by the discovery of the LE cell in 1948 and is characterized by the scientific advances noted above.
The history of lupus during the classical period was reviewed by Smith and Cyr in 1988.4 Of note are the derivation of the term lupus and the clinical descriptions of the cutaneous lesions of lupus vulgaris, lupus profundus, discoid lupus, and the photosensitive nature of the malar or butterfly rash.

The term lupus (Latin for wolf) is attributed to the thirteenth century physician Rogerius who used it to describe erosive facial lesions that were reminiscent of a wolf's bite.1,3 Classical descriptions of the various dermatologic features of lupus were made by Thomas Bateman, a student of the British dermatologist Robert William, in the early nineteenth century; Cazenave, a student of the French dermatologist Laurent Biett, in the mid-nineteenth century; and Moriz Kaposi (born Moriz Kohn), student and son-in-law of the Austrian dermatologist Ferdinand von Hebra, in the late nineteenth century. The lesions now referred to as discoid lupus were described in 1833 by Cazenave under the term "erythema centrifugum," while the butterfly distribution of the facial rash was noted by von Hebra in 1846. The first published illustrations of lupus erythematosus were included in von Hebra's text, Atlas of Skin Diseases, published in 1856.

The Neoclassical era of the history of lupus began in 1872 when Kaposi first described the systemic nature of the disorder:
"... experience has shown that lupus erythematosus ... may be attended by altogether more severe pathological changes ... and even dangerous constitutional symptoms may be intimately associated with the process in question, and that death may result from conditions which must be considered to arise from the local malady."5

Kaposi proposed that there were two types of lupus erythematosus; the discoid form and a disseminated form. Furthermore, he enumerated various symptoms and signs which characterized the disseminated form including
(1) subcutaneous nodules, (2) arthritis with synovial hypertrophy of both small and large joints, (3) lymphadenopathy, (4) fever, (5) weight loss, (6) anemia, and (7) central nervous system involvement.5

The existence of a disseminated or systemic form of lupus was firmly established by the work of Osler in Baltimore6 and Jadassohn in Vienna7 in 1904. Over the next thirty years, pathologic studies documented the existence of nonbacterial verrucous endocarditis (Libman-Sacks disease)8 and wire-loop lesions in patients with glomerulonephritis;9 such observations at the autopsy table lead to the construct of collagen disease proposed by Kemperer and colleagues in 1941.10 This terminology, collagen vascular disease, persists in usage now fifty years after its introduction.

The sentinel event in the mid 1900s which heralded the modern era was the discovery of the LE cell by Hargraves and colleagues in 1948.11 The investigators observed these cells in the bone marrow of patients with acute disseminated lupus erythematosus and postulated that the cell "... is the result of ... phagocytosis of free nuclear material with a resulting round vacuole containing this partially digested and lysed nuclear material ..." This discovery ushered in the present era of the application of immunology to the study of lupus erythematosus.

Two other immunologic markers were recognized in the 1950s as being associated with lupus: the biologic false-positive test for syphilis12 and the immunofluorescent test for antinuclear antibodies.13 Moore, working in Baltimore, demonstrated that systemic lupus developed in 7 percent of 148 subjects with chronic false-positive tests for syphilis and that a further 30 percent had symptoms consistent with collagen disease.12 Friou applied the technique of indirect immunofluorescence to demonstrate the presence of antinuclear antibodies in the blood of patients with systemic lupus.13 Subsequently, the recognition of antibodies to deoxyribonucleic acid (DNA)14 and the description of antibodies to extractable nuclear antigens (nuclear ribonucleoprotein (nRNP), Sm, Ro, La), and anticardiolipin antibodies; these autoantibodies are useful in describing clinical subsets and understanding the etiopathogenesis of lupus.
Two other major advances in the modern era have been the development of animal models of lupus and the recognition of the role of genetic predisposition to the development of lupus.

The first animal model of systemic lupus was the F1 hybrid New Zealand Black/New Zealand White mouse.16 This murine model has provided many insights into the immunopathogenesis of autoantibody formation, mechanisms of immunologic tolerance, the development of glomerulonephritis, the role of sex hormones in modulating the curse of disease, and evaluation of treatments including recently developed biologic agents such as anti-CD4 antibodies among others. Other animal models that have been used to study systemic lupus include the BXSB and MRL/lpr mice, and the naturally occurring syndrome of lupus in dogs.17

The familial occurrence of systemic lupus was first noted by Leonhardt in 1954 and later studies by Arnett and Shulman at Johns Hopkins.18 Subsequently, familial aggregation of lupus, the concordance of lupus in monozygotic twin pairs, and the association of genetic markers with lupus have been described over the past twenty years.19 Presently, molecular biology techniques are being applied to the study of human lympho-cyte antigen (HLA) Class II genes to determine specific amino acid sequences in these cell surface molecules that are involved in antigen presentation to T-helper cells in patients with lupus. These studies have already resulted in the identification of genetic-serologic subsets of systemic lupus that complement the clinico-serologic subsets noted earlier. It is hoped by investigators working in this field that these studies will lead to the identification of etiologic factors(e.g.,viral antigens/proteins) in systemic lupus.

Finally, no discussion of the history of lupus is complete without a review of the development of therapy. Payne, in 1894, first reported the usefulness of quinine in the treatment of lupus.20 Four years later, the use of salicylates in conjunction with quinine was also noted to be of benefit.21 It was not until the middle of this century that the treatment of systemic lupus was revolutionized by the discovery of the efficacy of adrenocorticotrophic hormone and cortisone by Hench.22 Presently, corticosteroids are the primary therapy for almost all patients with systemic lupus. Antimalarials are used principally for patients with skin and joint involvement on the one hand and cytotoxic/immunosuppressive drugs are used for patients with glomerulonephritis, systemic vasculitis, and other severe life-threatening manifestations on the other.23 Currently, newer biologic agents are being investigated in treating patients with lupus.
Thus, the history of lupus, although dating back at least to the Middle Ages, has experienced an explosion in this century, especially during the modern era over the past forty years. It is hoped that this growth of new knowledge will allow a better understanding of immunopathogenesis of the disease and the development of more effective treatments.

REFERENCES
Lahita RG. Introduction. In: Lahita RG, ed. Systemic Lupus Erythematosus. New York: John Wiley and Sons. 1987; 1-3. (Fourth edition published 2004)
Talbott JH. Historical background of discoid and systemic lupus erythematosus. In: Wallace DJ, Dubois EL, eds. Lupus Erythematosus. Philadelphia: Lea & Febiger. 1987; 3-11. (Sixth Edition published 2002)
Boltzer JW. Systemic lupus erythematosus. I. Historical aspects. MD State Med J 1983; 37:439.
Smith CD, Cyr M. The history of lupus erythematosus from Hippocrates to Osler. Rheum Dis Clin North Am 1988; 14:1.
Kaposi MH. Neue Beitrage zur Keantiss des lupus erythematosus. Arch Dermatol Syphilol 1872; 4:36.
Osler W. On the visceral manifestations of the erythema group of skin diseases (third paper). Am J Med Sci 1904; 127:1.
Jadassohn J. Lupus erythematodes. In: Mracek F, ed. Handbach der Hautkrakheiten. Wien: Alfred Holder, 1904; 298-404.
Libmann E. Sacks B. A hitherto undescribed form of volvular and mural endocarditis. Arch Intern Med 1924; 33:701.
Baehr G, Klemperer P, Schifrin A. A diffuse disease of the peripheral circulation usually associated with lupus erythematosus and endocarditis. Trans Assoc Am Physicians 1935; 50:139.
Klemperer P. Pollack AD, Baehr G. Pathology of disseminated lupus erythematosus. Arch Path (Chicago) 1941; 32:569.
Hargraves MM, Richmond H, Morton R. Presentation of two bone marrow elements: The tart cell and the LE cell. Proc Staff Meet Mayo Clin 1948; 23:25.
Moore JE, Lutz WB. The natural history of systemic lupus erythematosus: An approach to its study through chronic biological false positive reactions. J Chron Dis 1955; 2:297.
Friou GJ. Clinical application of lupus serum nucleoprotein reaction using fluorescent antibody technique. J Clin Invest 1957; 36:890.
Deicher HR, Holman HR, Kunkel HG. The precipitin reaction between DNA and a serum factor in SLE. J Exp Med 1959; 109:97.
Tan EM, Kunkel HG. Characteristics of a soluble nuclear antigen precipitating with sera of patients with systemic lupus erythematosus. J Immunol 1966; 96:404.
Bielschowsky M, Helyer BJ, Howie JB. Spontaneous haemolytic anemia in mice of the NZB/BL strain. Proc Univ Otago Med School 1959; 37:9.
Hahn BH. Animal models of systemic lupus erythematosus. In: Wallace DJ, Dubois EL,eds. Lupus Erythematosus. Philadelphia: Lea & Febiger. 1987; 130-57.
Arnett FC, Shulman LE. Studies in familial systemic lupus erythematosus. Medicine 1976; 55:313.
Hochberg MC. The application of genetic epidemiology to systemic lupus erythematosus. J Rheumatol 1987; 14:867-9.
Payne JF. A post-graduate lecture on lupus erythematosus. Clin J 1894; 4:223.
Radcliffe-Crocker. Discussion on lupus erythematosus. Br J Dermatol 1898; 10:375.
Hench PS. The reversibility of certain rheumatic and non-rheumatic conditions by the use of cortisone or of the pituitary adrenocorticotrophic hormone. Ann Intern Med 1952; 36:1.
Lockshin MD. Therapy for systemic lupus erythematosus. N Engl J Med 1991; 324:189.

=========================================================== This information is for"informational purposes" and is not meant to be used for medical diagnosis. Always consult your physician on matters such as this.

Inspiration, Perseverance, and Love

For several years now, we've tried to make as much information available about Lupus here on the Blog. A deeper insight combined with further education about something is never a bad thing.

Lupus is without doubt a very serious illness, one that touches many more people today, than years ago. In providing all the educational material that has been posted, the focus seems to have been one of the effects, symptoms, and some treatments that have been documented by the medical profession.

You have to realize that Lupus doesn't just affect those who have the illness, but also the people who are held closest in our hearts, our families and loved ones.

Being human we need to communicate with one another, to let others know how we feel, even if it's only a sincere offer of support or a kind word that touches someone deeply. All too often we take those things for granted, but to someone, somewhere it empowers and strengthens.

We are 'highly' encouraging anyone who has Lupus, or who is close to someone with the disease to let their voice be heard.

We want you to share your experiences and stories with everyone around the world. You just never know whose life you can brighten, the strength your words can build, and the courage it could bring about.

Just simply register here at the Blog, it's free and only takes just a few minutes. Tell the 'world' your stories, lend a shoulder for a kind soul and make a difference in someone's life.

So please take the time to register so you can reach out your heart and lighten someone's heavy load.

=========================================================== This information is for "informational purposes" and is not meant to be used for medical diagnosis. Always consult your physician on matters such as this.

Living Well with the Losses of Lupus

Survival – emotional and physical – is tricky business. It involves a balancing act, which centers on the ability to regain a steady state when powerful agents or events throw a person out of equilibrium. Imagine a circus tightrope walker. A sudden shift in the tautness of the line can cause even the most experienced performer to lose her footing and fall off balance. Such loss of control can threaten survival. Indeed, it is that threat which causes us to be mesmerized by the tightrope walker. We are awed by her ability to survive, by her knowledge of how to get balance back when it is lost or, when necessary, how to fall into a safety net without consequence. Survival of both the mind and body often depends not only on maintaining a balanced state but also on regaining control or minimizing damage in the face of unavoidable losses. Living, and especially living well, depends on a little bit of luck and a lot of practice and hard work.

No one of us walk a perfect tightrope. We are daily required to alter how we go about things as the imperfections of life present themselves to us. Adaptation to change is a constant in all our lives. Those who live with lupus are especially challenged to stay in equilibrium and remain balanced, as this is a disease that requires more than adjustment at the time of diagnosis. Lupus demands a lifetime of refining or redesigning path and destination, as the disease remits and relapses, over and over. With each new flare or newly emerged disability comes another time or arena of loss. Living well with the losses of lupus is a tricky act to perform.

The losses of lupus are as many and varied as the people who have it. Each of us is unique, not fully like any other, and so our experience is often idiosyncratic. Nonetheless, some losses are common to lupus patients, and they can be placed into one of two categories. First, there are the tangible losses – e.g., those that may come from an appearance changed by disease or medications, from an income decreased by lost work time, or from restrictions on outdoor activity. Second, there are the intangible losses – e.g., those that come from diminished self-confidence, from the necessity of confronting one's mortality, or from feeling dependent on others. Coping successfully with the losses of a life with lupus takes a great deal of time, courage and effort. And because of the chronic, up-and-down nature of the disease, it is a process that never fully ends. Living with lupus can feel, at times, like an endless tightrope walk on a bad day at the circus!

Just as we each have our own unique losses, we also develop our own special ways of coping, of regaining our balance, of surviving. But there are some universal truths about adapting to loss. The model of successful coping that I find most useful (see footnote) is based on two critical ideas – that losses must be mourned and that the grieving process is actually a group of tasks, each of which must be carried out over time and with considerable expenditure of energy. In other words, adjusting to loss is long, hard work. It is no wonder that some shy away from doing grief work and choose instead to cope in ways that are less effective in the long run but much easier and less painful in the short-term.

Mourning losses, thereby reinstating emotional equilibrium, requires grief work. This work can be divided into four different tasks which may be accomplished in any order and may be worked on simultaneously. In that sense, what is described here is not a stage theory of mourning. One does not proceed in lockstep fashion through a series of stages to reach an adaptation to losses. Human beings like to think in terms of stages but we don't function in such a rigid way. Instead, we tend to work on an issue for awhile, move on to other concerns, and then revisit the issue when we are ready to proceed with it.

One of the tasks of successful grief work is to accept the reality of the loss. The losses of lupus can be numerous and initially overwhelming. It is not unusual for a caller to our office to say that she has had a diagnosis of lupus for several months but is only now ready to educate herself about the disease and seek support. It takes time to get over the disbelief that follows shocking news and to acknowledge the losses and changed needs that accompany chronic disease. How is this accomplished? Primarily by talking, by “telling the story” of the loss, articulating what has happened, and how and when it occurred. This telling must be done over and over and it must be heard by willing listeners. With each recounting of the tale, what has changed or been lost becomes more real and integrated into the person's self-concept. Individuals who are reluctant to talk about themselves or who are surrounded by well-meaning others who won't discuss upsetting topics are often stuck on this task. By not telling the story to others, they are able to maintain their denial of a changed reality. This not only precludes completion of grief work; it can also keep patients from taking care of their medical needs. Denial can easily set in periodically for people who live with lupus, since disease activity may subside for long intervals, allowing for a false sense of total wellness. Whether through regular participation in formal support groups or informal discussions with friends, the losses of lupus must be given “air time” to be accepted as reality.

Another task of grief work may be the hardest of all. It entails expression of the many feelings that accompany major loss. This can be a great challenge, as many of us are taught from an early age to hide our feelings. We may have had few role models to show us how to safely and fully ventilate painful emotions such as anger (“I hate that this is happening”), guilt (“I did something bad to make this happen”), anxiety (“I feel that I have no control over what is happening”) and deep sadness (“I am utterly without joy since this has happened”). Responses such as these are normal in the face of significant loss, yet we may believe that they should be stifled. Inhibiting the expression of feelings does not destroy them, it simply insures that the feelings will be expressed in unhealthy, indirect ways. Each of us has a unique way of ineffectively coping with emotions – e.g., drinking too much to dull the pain, not taking good care of ourselves so as to feel punished, becoming demanding and rigid to feel in control The person who lives well with lupus works to find or create a therapeutic environment where the emotions that accompany loss may be fully felt and safely expressed on an ongoing basis.

The tasks of grief work also include adapting to an environment in which the lost entity is missing Simply put, the challenge is to figure out how to live joyfully and productively now that things are different. What adaptations – in the routines of daily life, in the ways you feel good about yourself, in the manner by which you make others happy – have to be made? Change requires learning to do things differently or learning to do without certain things. We usually embrace change which we have sought but resist change thrust upon us. So the new learning which follows loss often occurs slowly. It takes time and diligence to identify the inner resources (e.g., coping style, maturity, intelligence, belief system) and the external supports (e.g., quality and quantity of relationships) which will undergird the new structure of life.

The last of the tasks is one of moving forward and becoming emotionally invested in life again. When a major life change – such as the emergence of chronic disease – happens, one has to say good-bye to a way of life that can no longer be. When such loss first occurs, there is little else about which one can think or feel. It absorbs attention and emotions completely. Being a person with lupus is the only way in which one sees oneself and one sees little else but the losses that this entails. But over time, and with work on the three tasks mentioned previously, one is able to focus on and become absorbed by other things. You come to believe that having lupus is only one of the many aspects of your identity. You learn that it has a place in your life but does not define your life. This happens when the losses of lupus are real to you, and you experience the feelings around those losses and you are adapting to the changes they've created. A sense of equilibrium and a realistic perspective return. You move through and beyond your grief. You never forget what you have lost; at the same time, you recognize that you can live well with what you've got and what is yet to come.

Like the seasoned tightrope walker who has finished a performance plagued by unexpected gusts of wind and loosely tied line, you know you'll go on another day. You know the trick to regaining your balance and insuring your survival.


By Jeri L. Falk
Executive Director, Maryland Lupus Foundation
Associate Professor of Psychology, Adjunct, University of Baltimore

=========================================================== This information is for"informational purposes" and is not meant to be used for medical diagnosis. Always consult your physician on matters such as this.

Living With Pain

Managing life today can be difficult. Managing life with pain is even more challenging, but it is possible. There are ways to balance your life so that you can live the way you choose, rather than your illness dictating. The key is for you to become an active member of the treatment team. It is important to understand what your responsibilities are to ensure a near normal life style. Your health care team will do all they can to provide the necessary medical care, but you will be responsible for much of the day-to-day routine.

First you must clearly understand what your needs are. Personal needs can range from a balance between getting the proper rest and physical exercise to taking medications and reducing stress. While managing illness and pain are complex issues, the majority of the key components are simply common sense and good living skills. Things such as good nutrition, open communication with family and friends, asserting yourself so that your needs are met, and finding balance between activity and rest are all key components in successfully managing pain.

It is important to recognize your limitation to prevent becoming overly tired or risking increasing pain levels. Staying within your limits can enhance your ability to think clearly and concentrate on important tasks. Understanding personal needs will provide a means to develop a workable plan so that you can incorporate important tasks into your daily routine.

Journaling is an excellent way to ensure necessary tasks are completed while brining you one step closer to independence. Balancing daily activities with necessary rest periods is easier when you have a written overview of your endurance.

Your journal can also provide you with insight into daily stressors. Reducing stress is vital in the fight against pain. Muscles that are already painful will experience increased pain as your stress level increases and your muscles tighten. There are relaxation exercises and audiotapes available to teach ways to recognize stress and reduce tension.

Recognizing and understanding feelings are another important component to successful pain management. When you ignore feelings, they do not go away, but can show up as increased tension, feeling out-of-sorts, or even anger. Dealing with feelings as they occur can greatly reduce both stress levels and pain. Your journal, with its daily entries, can become your road map to wellness and provide you with a sense of empowerment.

Daily exercise should also become a routine activity. Simple stretches can strengthen muscles, improve circulation and improve energy levels. Ask your doctor about an exercise program designed to fit your ability. Invite your family to exercise with you or try exercising to some lively music.

When you plan your day, keep in mind your need to pace activities according to your ability for that particular day. A simple way to remember the importance of pacing is with the word PACE.

P is for prioritizing your tasks to ensure that the most important ones get done first.

A is for planning your actions to ensure the best result.

C is to remind you of your physical comfort. If a task creates increased pain levels, then perhaps you need to ask for help.

E is for energy. Energy levels are never the same from day to day.

You need to consider how much energy you have at the beginning of each day to ensure you are working and playing within your ability.

By combining PACE – Priorities, Actions, Comfort and Energy – with your personal commitment to a near-normal life, you can begin to feel like a person rather than a patient.

By Penny Cowan, Founder and Executive of the American Chronic Pain Association. Reprinted with permission from NewSLEtter, the Bay Area Lupus Foundation newsletter.

=========================================================== This information is for"informational purposes" and is not meant to be used for medical diagnosis. Always consult your physician on matters such as this.

Looking Your Best with Lupus

It's difficult to be confident when you're self-conscious about the way you look. Many people with lupus experience changes in appearance due to the medications they take or the lupus itself, everything from weight gain to hair loss. The following suggestions are not intended to make you feel more self-conscious about yourself; they're just ideas to make you more comfortable with your appearance and boost your self esteem when lupus is wearing you down physically.

It's a Skin Thing

Malar (butterfly) rashes or stretch marks can make you feel pretty self-conscious. The malar rash, which appears in a lot of lupus patients, spreads across the cheeks and the bridge of the nose like a rosy butterfly. There are products out there that you can use to minimize the appearance of this rash. More than just makeup (and a little more pricey than most drugstore brands, too), the products are specifically designed to cover hard-to-hide skin problems. Look for Dermablend or ask a cosmetician to recommend some products. As for stretch marks, you can use these products on those too, but if you have too many to cover, stick to concealing clothes instead. There are anti-stretch creams on the market and eventually those red and purple marks will fade into a paler shade of white. If you're having trouble getting the makeup just right, book yourself a makeover – it might even be fun!

Rapunzel No More

Your hair's falling out! While this can be awful, there are ways to deal with it. First of all, be nicer to the hair you do have. Avoid any products that irritate your scalp or any products that may make you lose more hair, e.g., stick to coated elastic, not rubber, bands. . . on second thought, pony tails can be stressful to your hair. While brushing, be gentle. To cover up thinner hair, experiment with hats or scarves. If hair loss is severe, you can find great synthetic or real hair wigs and they're easy to take care of.

Wait, Now I'm Growing Hair in Other Places!

Strange, isn't it? The hair on your head falls out while hair elsewhere - say, your upper lip – grows like a weed. This is a side effect of certain medications. To get rid of the fuzzy stuff, get your hands on some hair removal products like creams, waxes, natural sugar or honey, bleach, electrolysis – all dedicated to making you fuzz free. If you're not a do-it-yourselfer, visit a salon; they're pros at this kind of thing.

Indulge Yourself

Don't forget the most important part of yourself to cultivate; your inner beauty, of course! All the makeup in the world won't help you if you don't believe in your inner beauty. Don't let lupus (or anything else) make you think otherwise.

Edited for clarity; reprinted from Work Out, the employment newsletter for people living with lupus and other chronic illnesses.

=========================================================== This information is for"informational purposes" and is not meant to be used for medical diagnosis. Always consult your physician on matters such as this.

Young People Beware: Alcohol and Lupus Don't Mix

There's no way to soften the bad news about drinking alcohol. While anyone is at risk from alcohol's negative side-effects, people who take prescription medications (and also some over-the-counter-ones) put themselves at an even greater risk of suffering health troubles.

The problems occur because alcohol can change the way the body uses, or metabolizes, certain medications. Alcohol is absorbed through the intestinal tract and shuttled to the liver, where chemical "knives" called enzymes break it into smaller molecules. Trouble is, alcohol causes the body to make more of these enzymes, especially when someone drinks regularly (even so-called "social" amounts of alcohol). Some of these enzymes are the same "knives" that break down medications so the body can use them. In producing more enzymes, the liver metabolizes medications faster. The bottom line: medications are sent into the bloodstream much faster and to a larger extent than when you don't drink. This can be dangerous, intensifying both the positive and negative side-effects of medications.

It is a myth that you can avoid these alcohol medication side-effects by taking medications while you are not drinking: the liver is still in "over-drive," producing more of these enzymes for some time after you drink. Another myth: "You have to drink hard liquor to suffer dangerous consequences." Beer and wine are just as likely to cause problems.

Of the 50 most frequently proscribed drugs, more than half contain ingredients that react adversely with alcohol. Among the negative effects are seizures, headaches, nausea, vomiting, mental confusion and coma. Don't forget that medications that are available without a prescription can also react adversely with alcohol. People with lupus, for example, often take Tylenol to alleviate pain. Drinking any amount of alcohol can cause Tylenol to be toxic to the liver at much smaller doses. Alcohol mixed with aspirin can lead to bleeding in the stomach. If you are taking methotrexate or other immunosuppressive medications, drinking greatly increases the chance that you will suffer liver damage.

Young bodies demand good nutrition. Teenagers and young adults need relatively more protein and nutrients to support growth and development. In addition, anyone with a chronic disease like lupus needs even better nutrition to also fight the chronic disease. Alcohol interferes with good nutrition in a couple of ways. Alcohol causes the body to waste some nutrients, basically by burning them up at a faster rate. In addition, the body's first priority is to metabolize or use alcohol, rather than the type of calories a person (especially teenagers) needs to grow. Anyone with lupus should avoid alcohol, particularly when taking medications, or restrict their alcohol intake as much as possible.

By Kristine M. Napier, N.P.H., R.D., L.D.

Reprinted, with permission, from Lupus World, Patient Empowerment Through Information, a publication of the University of Massachusetts Medical School, Worcester, MA 01655. Vol.1, No.2. With special thanks to Henrietta Aldjem, Editor.

=========================================================== This information is for"informational purposes" and is not meant to be used for medical diagnosis. Always consult your physician on matters such as this.

Substance Abuse in Chronic Illness - A Challenge to Young Adults

Lupus is a disease that usually afflicts women between the ages of 15 and 45. The important word here is "usually" because, as most of you know, lupus can be found in children who are but a few years old up to those who are 15 years of age. Childhood lupus can range from an inconvenient to life-threatening problem.

This is not very different from the adult variety; however, the emotional aspects of it are very different. Children and adolescents suffering from lupus at times may feel severely restricted in what they are allowed to do and in what they are able to do. They may feel suffocated by their parents whose only "crime" is caring too much. Young people with lupus are often required to grow up well before their time. They must possess a certain responsibility that does not allow them to be children, to be teenagers. This leads to a certain sense of frustration and anguish.

However, with appropriate thought, guidance and consideration, such individuals will function quite normally and learn to develop a perspective on how best to view their disease. I think that it is most important that people afflicted with this or any other chronic illness not be "disease oriented" but rather be "life oriented." There are times when their lupus will dominate their day-to-day lives, but there are many times when it should not be so dominant.

There are those, however, who try to take the fact that they must live with a chronic disorder such as lupus and try to forget about it. In these instances, people with this attitude will expose themselves to unnecessary peril.

There are a number of things that go on in a teenager's world that are not necessarily good for anyone, let alone people who have lupus. This includes experimentation with alcohol, smoking and even illegal drugs. No matter who you are, you may be taking chances with your life by using these. Young people with lupus may be in a much more difficult position and fail to realize that the chances they are taking far outweigh those of the average teenager.

Lupus itself is a disease that can affect many organ systems. It is also a disease that can affect the circulation or blood flow to the body. If we look at smoking, for example, the risks taken by someone with lupus are different and more severe than those taken by someone who does not have this disease. One merely has to look at the problems of Raynaud's phenomenon. Smoking aggravates this problem, in which the fingers become white or blue upon exposure to cold.

Cigarettes contain nicotine, a very powerful chemical that causes blood vessels to constrict or clamp down. In people who have problems with circulation to the fingers and toes, clamping down can become so serious that they lose blood supply to the fingers and toes. In extreme cases, they could even lose fingers and toes because of lack of blood supply.

Street drugs can have a similar effect; indeed, their effect on blood flow may be even more severe. Furthermore, street drugs may have very serious effects on the liver and kidneys. In some people living with lupus, these organ systems are already affected, so by taking street drugs a person with lupus adds more poisons and exposes these already damaged organs to further injury. This could lead to loss of organ function to the extent that the liver may deteriorate and put life at risk. In the case of kidneys, the damage may be severe enough to make dialysis necessary.

It is also important to remember that there are various medications that may be necessary for people with lupus to take on a regular basis. Some of these drugs have side effects affecting various organs such as the liver, kidneys and bone marrow. The combination of such drugs as Imuran, Methotrexate or Cyclophosphamide with alcohol may exaggerate the known side effects of these drugs, putting organ systems at greater risk of permanent damage. Such damage could even lead to a life-threatening situation.

For example, it is well known that Methotrexate and alcohol are a very bad combination. Methotrexate is being used with increasing frequency in treating people with lupus. In many individuals the benefits of this drug have been surprisingly good. However, one of the problems with Methotrexate is that it may have some degree of liver toxicity. If an individual who is taking Methotrexate drinks alcohol, that liver toxicity is no longer a "maybe" but is almost a "definite." Persons who have responded extremely well to Methotrexate and possibly are even in remission with lupus may drink themselves into a situation where the Methotrexate must immediately be discontinued. They then may fall out of remission and suffer a lupus flare that could result in hospital admission or worse.

The easy answer to these problems is simply to stop taking the prescribed medications. In this way, I suppose you could say that experimentation with alcohol, cigarettes or street drugs becomes a less risky proposition. Unfortunately, discontinuing your medications makes risks much greater than you can imagine. I agree that it is frustrating, it is annoying and may cause you a tremendous amount of anger that you have lupus. Unfortunately, it is a problem that you may not deserve, but you've got anyway.

I think it is important to make that problem as small an aspect of your life as possible. Exposing yourself to needless risk will suddenly make lupus a problem in your entire life. So, in order for you to live your life, and not let lupus live your life think very carefully before you light that cigarette, drink that drink or try the latest "designer drug."

Dr. C. A. Laskin, a Rheumatologist who works in Toronto.

Minnesota Lupus News, August / September 1998, reprinted with permission from the Taking Life as a Challenge newsletter, Ontario Canada. TLC, geared to young people with chronic illness is supported by the Ontario Lupus Association.

=========================================================== This information is for"informational purposes" and is not meant to be used for medical diagnosis. Always consult your physician on matters such as this.

Explaining Chronic Illness to Your Child

Explaining Chronic Illness to Your Child

As a parent, if you become ill, your illness has a profound impact on the entire family system. In spite of your own increased stress, confusion and anger, your children will look to you to maintain or return to normal family routines as soon as possible. If you, or your spouse, present an image of feeling overwhelmed or being consumed with the illness, your children will feel as if life is spiraling out of control.

As parents, it is often instinctive to want to protect our children from hurt or pain. We want them to be carefree and experience the joy and happiness that only childhood can offer. However, as much as we don't want to acknowledge it, children do experience the same kinds of losses and disappointments that we, as adults, experience.

We, as the nurturers and protectors, must explain and "normalize" these experiences in the best way that we can.

No matter what the age of your child, it is helpful to know and understand the developmental stages and how children at each stage can be expected to respond to stress and change. Developmental refers to the concept that a child's behavior, like his physical growth, develops in patterned and predictable ways. The age and goals of your child at each stage will guide you in how and when you need to intervene when your family goes through a crisis.

The first developmental stage -- infancy up to age two -- is probably the easiest in terms of knowing how to respond. The primary developmental goal is to establish trust. The child is completely dependent on the mother (or primary caretakers) to have basic physical and emotional needs met. With love and nurturing, the infant (and older baby) will thrive and grow.

Adults generally assume that a baby is too young or unaware to notice a change in a parent or family. However, infants and babies are extremely intuitive and can sense when a parent is upset or anxious. Any change in daily routine can throw a baby into a fretful state. When crisis occurs, you may see the following behaviors: increased crying and irritability, changes in appetite and sleep schedules, clinging behaviors and regression. Separation anxiety, which occurs routinely, becomes exaggerated. The baby will develop offensive behaviors. Treat regressive behaviors casually and return to a normal routine as soon as possible.

If your toddler asks a question about your illness, answer openly and honestly. A rule of thumb is never offer more information than the child has requested. Concealing the illness or whispering about what is happening will not help. Children always suffer more from the tension of not knowing than from knowing the truth. Allowing the child to act out fears and frustration through play or art is also an excellent help.

Preschool, ages four to five years, is the age of expansion. Preschoolers are ready to move out of the safety zone of the home and into a broader social arena. There is an increased reliance at this stage on "magical thinking." To a preschooler, anything that happens, good or bad, is related to them and their behavior. If a parent becomes ill during this stage, the preschooler's view will be: "Mommy is sick because I told her she was mean."

In response to stress and change, preschoolers often present with extremes, either being all good or all bad. This is the child's attempt to maintain a sense of control and to feel less frightened. Regressive behaviors are likely to occur, especially an increased reliance on a favorite security object (blanket, teddy bear, thumb-sucking).

To help preschoolers, it is essential to assure them that the illness is not their fault. Returning to a security object should be encouraged, rather than discouraged. Answer all questions honestly, including those about death. This is a good time to rely on books which help you help your child work through complex and often frustrating feelings about illness.

The primary development goal of the school-age stage (six to ten years) is achievement. The focus is school, outside activities and developing strong peer relationships. While parents and family are still central, the biggest concern is: "What will happen to me if you are ill?" This self-centeredness is normal.

Although there is still some overlap with magical thinking, by the age of eight children realize that illness may not be their fault. However, they still are not mature enough to remove themselves completely from the situation. The thinking now is: "If I'm good, Mommy will feel better and things will be fine."

School-age children tend to show strong emotions in reaction to change. They may show anger at both parents: "Why did you let this happen?" They tend to have a lot of somatic complaints (headache, stomach pain, fatigue), especially when leaving for school. The child is often fearful to leave the ill parent; he or she often assumes a protective role. Earlier in this stage, children are fearful that if they leave, the parent may die. As such, preoccupation and fear of death may be common.

When attempting to help school-age children, it is important to recognize that angry outbursts are an attempt to grieve or release fearful feelings. The opposite reaction, denial, may also occur as the child hopes that the illness will just disappear. Children will have many more questions and concerns at this stage. However, only the simplest explanations need be given. Information they don't understand will only frighten them and increase anxiety. Questions about death must be answered directly; evasion leads to more fear.

Changes in school performance, either for better or worse, are common. It is essential to let teachers know about the changes at home and to establish a feedback loop.

Our final stage of development is adolescence. The primary goal is to develop a self-identity that is capable of independent action. Adolescents work to achieve separation from parents and to become independent of the family system. This stage is a painful one for both parent and child, as both struggle in this journey toward separation.

Under normal circumstances, adolescents are known for their emotional volatility and moodiness. When a crisis occurs, you may see and hear even more expressions of anger, hurt and confusion. The opposite extreme is also common -- they may withdraw completely and not want to discuss your illness or their feelings about what's happening. There will be ambivalence about helping you. If you have an adolescent who is willing to do his or her part in helping the family, this will not extend to outside the home. Fitting in and acceptance by peers will be much more important than appearing helpful to the family. It is normal for them to be embarrassed by the illness and not want to discuss it with friends or teachers.

This is an essential time for parents to fine tune their communication skills. It is imperative to listen to and understand the volatile outbursts of the adolescent. Accept these feelings without overreacting to their tone. Continue to set limits, rules and boundaries, but keep the task of separation in mind. These outbursts are often fear-based.

At a time when they often feel out of control, teenagers cling to the hope that parents and family will remain structured and safe. Remember, even though he or she appears grown, your adolescent needs as much love and reassurance as your younger children.

In discussions about your illness, be prepared to give much more detailed information, especially all the facts about the illness. A major concern or fear will be: "Will I get it too?"

Some adolescents (the withdrawing ones) may not want to hear about or discuss your illness. They may express anger or disappointment toward the ill parent. These behaviors serve to diffuse their own fears or feelings of inadequacy in controlling the changes that are occurring or may occur in the future. Honest and open discussion of your own feelings may help them to express their own feelings.

One of the most difficult obstacles for parents of the adolescent is to overcome the expectation that he or she will be mature enough to handle the situation and to provide support. In actuality, they are overburdened with their own concerns and too vulnerable to carry the adult concerns.



In conclusion, the following reminders are offered to help you during times of crisis:


- Your children, like mirrors, reflect adult stress and behavior.
Be assured that most children experience times of high stress, confusion and frustration, yet still manage to develop and maintain a healthy sense of personal worth.

- Your children still need limits, rules and structure. Be the same parent you were before the illness.

- Discuss plans and decisions with your children commensurate with age and level of understanding. The more a child is included in planning, the more your relationship will be safeguarded.

- Do not assume the problem behaviors that a child exhibits in times of high stress will be permanent. However, if behaviors persist or worsen over time, seek professional help for the child and the family.


Jan Buxton-Truffer, MS, CEAP, is a counselor with the Sheppard Pratt Health Plan Employee Assistance Program.

Minnesota Lupus News, February / March 1998, reprinted with permission from Lupus Update, Maryland Lupus Foundation Newsletter, LFA, March 1997.

=========================================================== This information is for"informational purposes" and is not meant to be used for medical diagnosis. Always consult your physician on matters such as this.

Heart Problems in Children with Lupus

Introduction
It has been well established that accelerated atherosclerosis, or hardening of the arteries, occurs in adults with lupus, along with its eventual clinical outcomes-myocardial infarction (heart attack) and stroke.

However, atherosclerotic heart disease is emerging as one of the most serious concerns in children and adolescents with lupus. Young, premenopausal women with lupus are up to 50 times more likely to have a heart attack than women of the same age who do not have lupus (1). Our research and that of other investigators indicate that these clinical outcomes are generally related to accelerated atherosclerosis (2,3).

Evidence of heart problems in children with lupus Children with lupus are known to experience myocardial infarction and stroke. Although the frequency of atherosclerosis in these young patients is not fully known, emerging evidence suggests the incidence may be similar to that in premenopausal women with lupus.

It is not unreasonable to suspect atherosclerotic development at young ages, as evidence of fatty streak formation-an early step in plaque formation-has been noted in healthy children as young as two to three years of age.

Atherosclerosis-promoting patterns of cholesterol, triglycerides, and other lipoproteins in children and adolescents with lupus have been documented (4). Coronary blood flow abnormalities were found in 16 percent of children and adolescents with lupus who had no cardiac symptoms. This suggests that there may be a significant percentage of young lupus patients with undiagnosed heart disease.

In addition, evidence of carotid atherosclerotic plaque and abnormal coronary blood flow have been detected two to five years after the onset of lupus, indicating that atherosclerosis may develop very early in the course of disease (5,6).

What causes heart disease in lupus? We do not completely understand the underlying biological cause for accelerated atherosclerosis in young patients with lupus, probably because we do not yet completely understand the underlying biological cause of lupus. One thing we do know is that two key factors are the disease of lupus, itself, and its treatment.

It was initially thought that the increased risk of heart disease in patients with lupus might be due to traditional risk factors, such as:

• hypertension
• diabetes
• obesity
• elevated cholesterol levels.

But recent evidence indicates that the presence of lupus itself, or the treatment for lupus, contribute more than those risk factors alone (2,7). The task now is to identify the biological processes occurring in lupus or resulting from its treatment that promote atherosclerosis.
It was once believed that excess cholesterol built up as plaque inside the blood vessels and obstructed blood flow. Investigators now know that fewer than 20 percent of heart attacks are due to restricted blood flow in progressively narrowed coronary vessels. More commonly, heart attacks occur when an atherosclerotic plaque ruptures and a blood clot forms around the plaque (8).

There are several potential parallels between lupus and the formation and rupture of atherosclerotic plaques (9).

A. For instance, damage to the lining of the blood vessels provokes an inflammatory response, which leads to deposits of immune cells containing fat droplets into the arterial wall. This in turn leads to plaque formation.

B. Inflammation is also responsible for thinning the fibrous cap that covers a plaque, making it more vulnerable to rupture. The inflammatory substances known as cytokines that drive the formation of atherosclerotic plaques and increase the vulnerability of the plaques to rupture are the same substances that play a major role in the inflammatory processes seen in lupus. This may explain why cardiovascular disease is accelerated in lupus.

C. Another factor related to lupus as a prime suspect as sources of damage to the lining of the arterial wall is high levels of circulating immune complexes. Although immune responses are important in the body's normal response to damage and microbial infections, in systemic lupus-and perhaps in atherosclerosis in general-these normally protective immune responses become dysregulated, leading to a high degree of inflammation and tissue damage.

D. A wide variety of autoantibodies may also hold responsibility. Elevated levels of antiphospholipid antibodies, which are often found in people with lupus, have traditionally been linked to an increased risk of blood clotting and may increase the risk of clot formation at the plaque site. More recent evidence suggests that these antibodies may also facilitate the uptake of oxidized low density lipoprotein, the "bad cholesterol," into inflammatory cells in the vessel wall. This is a key step in the formation of atherosclerotic plaque (10).

E. The amino acid homocysteine is another agent that is often elevated in lupus patients and is a likely source of arterial injury. Elevated levels of homocysteine have been linked to thrombosis in lupus patients (11) and to coronary heart disease and stroke in non-lupus patients. The reasons for elevated homocysteine in lupus are not entirely known, but may be related to kidney disease, diet, or treatment.

Is there a link between corticosteroids and atherosclerosis?With the advent of glucocorticoids (prednisone) in the 1950s, there has been a significant improvement in the lifespan of young people with lupus. Yet there is concern that these agents may actually contribute to the development of atherosclerosis, either directly by promoting plaque formation or indirectly by intensifying risk factors such as:

• weight gain
• hypertension
• elevated serum glucose and lipid levels.

In contrast, some evidence indicates that the anti-inflammatory effects of glucocorticoids may actually provide protection against atherosclerosis, suggesting that poorly controlled lupus activity may contribute to cardiac disease, with corticosteroid treatment providing a degree of protection.

Perhaps with the use of newer biologic therapies with similar anti-inflammatory and immunomodulatory effects as corticosteroids, but fewer adverse side effects, we will begin to see a reduction in heart disease.

How can atherosclerosis be managed in young people? It is of critical importance that physicians and patients be aware of the increased risk of cardiovascular complications in lupus. Young people generally view their risk of heart disease as negligible, yet cardiovascular disease intervention and prevention has the potential to significantly lengthen and improve the quality of their lives over many years.

Chest Pain.

Any physician treating a young person with lupus, regardless of the patient's age or sex, should be suspicious of chest pain. Because the patients are young and because chest pain in lupus may be attributable to other causes, physicians may overlook conditions, such as angina (chest pain due to myocardial ischemia). Yet often there are no warning signs for an impending heart attack. For these reasons, a major focus on management strategies should rest on preventing the development of atherosclerosis.

Diet.

There have been reports on the potential benefits of diet modification in controlling abnormal lipid levels in children with lupus, but diet alone is not always sufficient, and pharmacologic therapy may be necessary. However, the type, timing, and dosage of such therapy in children have not been well established by large studies.

Blood clots.

Measures to reduce potential blood clots, such as anticoagulation or antiplatelet therapy, should be considered in patients at increased risk, such as those with kidney disease, antiphospholipid antibodies, and other coronary disorders.

There are few clinical data on the effects of non-steroidal anti-inflammatory drugs (NSAIDs) on atherosclerosis. However, some evidence suggests that the selective inhibitors of the prostaglandin-producing enzyme COX-2 might actually enhance blood clot formation in some non-lupus populations. Further investigation in this area is currently underway.
Aspirin. There is strong evidence from clinical trials to support the use of low-dose aspirin therapy in preventing heart attacks in the general population. At low doses, aspirin is probably reducing the clotting risk but not reducing inflammation.

Dietary supplements.

There is some evidence that the antioxidant vitamins E and C may improve arterial dilatation in children with familial hypercholesterolemia or combined hyperlipoproteinemia. However, the long-term benefit of antioxidant therapies in reducing cardiovascular risks in lupus is unknown. Measures to reduce homocysteine levels with folate supplementation may be beneficial; again, however, the effects on prevention of coronary events are unproven.
Steroids. Based on the possible opposing effects of corticosteroids-increasing traditional risk factors and controlling inflammation-there are no established recommendations about the use of corticosteroids concerning cardiovascular risk in lupus. In general, judicious use of these agents to control the underlying disease and to minimize the proven long-term side effects is recommended.

Table 1 (below) illustrates suggested strategies to manage and/or prevent atherosclerosis in young patients with lupus. These strategies are targeted at both traditional cardiovascular risk factors and at potential lupus-specific factors. Physicians should communicate these potential risks to patients and their parents, and provide relevant information and resources for patient education.

Table 1. Strategies For Managing Cardiovascular Disease Risk In Children With Lupus

Step 1: Physician awareness
Recognize increased risk in young population.
Conduct a thorough cardiac evaluation if there is any suspicion of heart disease.

Step 2: Patient education
Make patients and parents aware of increased risk.

Step 3: Minimize traditional cardiovascular risk factors
Encourage a regular aerobic exercise program.
Establish guidelines for a heart-healthy diet.
Assist with weight loss program, if necessary.
Start a smoking cessation program.
Control hypertension and diabetes, if present.
Treat hyperlipidemia.

Step 4: Address potential lupus-specific risk factors
Use corticosteroids judiciously.
Reduce homocysteine levels (folate supplementation).
Consider aspirin or anticoagulant therapy for patients at high risk for blood clotting.

Physicians also should work together with the patients and parents to encourage a heart-healthy diet, a regular exercise program that involves aerobic activity, and weight loss, if necessary. Patients should be advised not to start smoking and to quit if they have already started. Hypertension and diabetes should be managed aggressively.

Bottom line

It is clear that premature atherosclerosis in children, adolescents, and young, premenopausal women with lupus is a substantial medical concern. The reasons that atherosclerosis is accelerated in lupus patients likely involve the inflammatory and immune-mediated mechanisms shared by these two disease processes.
Until new biologic therapies are available that can halt the immune dysregulation and resulting inflammation and vascular damage in lupus, we must promote aggressive approaches to reducing traditional cardiovascular risk factors.

Noninvasive methods for specifically identifying vulnerable plaques might also pinpoint those lupus patients at greatest risk for heart attack and those most likely to benefit from intervention. Investigations into the pathways that lead to premature heart disease in lupus may provide an ideal model for examining the role of inflammation in all populations with cardiovascular disease.

About the Authors Susan Manzi, MD, M.P.H., is an Associate Professor of Medicine and Epidemiology at the University of Pittsburgh School of Medicine in Pennsylvania.
Janice M. Sabatine, Ph.D. is a medical writer and editor.
Laura E. Schanberg, MD is an Assistant Professor of Pediatric Rheumatology at Duke University Medical Center in Durham, NC.

=========================================================== This information is for"informational purposes" and is not meant to be used for medical diagnosis. Always consult your physician on matters such as this.

References
1. Manzi S, Meilahn EN, Rairie JE, Conte CG, Medsger TA, Jr., Jansen-McWilliams L et al. Age-specific incidence rates of myocardial infarction and angina in women with systemic lupus erythematosus: comparison with the Framingham Study. Am J Epidemiol 1997;145:408-415.2. Manzi S, Selzer F, Sutton-Tyrrell K, Fitzgerald SG, Rairie JE, Tracy RP et al. Prevalence and risk factors of carotid plaque in women with systemic lupus erythematosus. Arthritis Rheum 1999;42:51-60.3. Selzer F, Sutton-Tyrrell K, Fitzgerald S, Tracy R, Kuller L, Manzi S. Vascular stiffness in women with systemic lupus erythematosus. Hypertension 2001;37:1075-1082.4. Ilowite NT. Premature atherosclerosis in systemic lupus erythematosus. J Rheumatol 2000;27 Suppl 58:15-19.5. Gazarian M, Feldman BM, Benson LN, Gilday DL, Laxer RM, Silverman ED. Assessment of myocardial perfusion and function in childhood systemic lupus erythematosus. J Pediatr 1998;132:109-116.6. Falaschi F, Ravelli A, Martignoni A, Migliavacca D, Sartori M, Pistorio A et al. Nephrotic-range proteinuria, the major risk factor for early atherosclerosis in juvenile-onset systemic lupus erythematosus. Arthritis Rheum 2000;43:1405-1409.7. Esdaile JM, Abrahamowicz M, Grodzicky T, Li Y, Panaritis C, du BR et al. Traditional Framingham risk factors fail to fully account for accelerated atherosclerosis in systemic lupus erythematosus. Arthritis Rheum 2001;44:2331-2337.8. Libby P. What have we learned about the biology of atherosclerosis? The role of inflammation. Am J Cardiol 2001;88:3J-6J.9. Manzi S. Systemic lupus erythematosus: a model for atherogenesis? Rheumatology (Oxford) 2000;39:353-359.10. Vaarala O. Autoantibodies to modified LDLs and other phospholipid-protein complexes as markers of cardiovascular diseases. J Intern Med 2000;247:381-384.11. Petri M, Roubenoff R, Dallal GE, Nadeau MR, Selhub J, Rosenberg IH. Plasma homocysteine as a risk factor for atherothrombotic events in systemic lupus erythematosus. Lancet 1996;348:1120-1124.

Eating More Fish – The Answer To Lupus?

Eating More Fish – The Answer To Lupus?
11th March 2003

Press Release from the University of Ulster , Ireland

New research from the University of Ulster today offered hope to millions of lupus sufferers worldwide.

Dr Emeir Duffy, from the School of Biomedical Sciences, and Dr. Gary Meenagh, from Musgrave Park Hospital , have discovered new evidence to suggest that fish oil can greatly reduce the symptoms of the disease.

Systemic Lupus Erythematosus (SLE) or Lupus is a disorder of the Immune System, where the body harms its own healthy cells and tissues. The body tissues become damaged causing painful or swollen joints, unexplained fever, skin rashes, kidney problems, complications to the cardiovascular system and extreme fatigue.

There are approximately 500 diagnosed cases of SLE in Northern Ireland and it is most common in women of child-bearing age.

At present there is no cure but a key to managing lupus is to understand the disease and its impact. Steroids are the main drug used in the treatment of lupus and they should be administered for the shortest period possible to reduce side-effects.

But recently researchers have been looking specifically at its management through diet. Fish oils contain long-chained polyunsaturated fatty acids which are essential for normal growth and development but also have anti-inflammatory and anti-autoimmune properties.

Dr Duffy said: “We have been investigating how fish oil can improve the quality of life for lupus sufferers.

“In lupus, the body's immune system does not work as it should. Antibodies, which help fight viruses, bacteria and other foreign substances, are not produced effectively. The immune system actually produces antibodies against the body's own healthy cells and tissues. These auto-antibodies contribute to inflammation and other symptoms of the disease.

“Participants in the study who were taking fish oil supplements, three times per day for twenty-four weeks, saw a reduction in disease activity, an improvement in quality of life and reported an overall feeling of improved health by the end of the study compared to those taking a placebo supplement. Participants taking the fish oil also showed a reduction in fatigue severity, the most debilitating symptom for lupus sufferers.

“From our study and from other work, there is evidence that increasing dietary intake of the polyunsaturated fats found in fatty fish can have beneficial effects for lupus sufferers. Good examples of fatty fish include mackerel, lake trout, herring, sardines, tuna and salmon”.

=========================================================== This information is for"informational purposes" and is not meant to be used for medical diagnosis. Always consult your physician on matters such as this.

New Research Shows Certain Vegetables May Delay the Onset and Reduce the Severity of Lupus

New Research Shows Certain Vegetables May Delay the Onset and Reduce the Severity of Lupus:

Scientists find that a compound abundant in broccoli, cauliflower and cabbage may help fight disease that affects 1.5 million Americans

A team of scientists from the North Shore-Long Island Jewish (LIJ) Research Institute have discovered that a compound found in abundance in the cruciferous family of vegetables delays the onset of systemic lupus erythematosus (SLE) in mice and reduces the severity of the disease once it has developed. This could be good news for individuals at risk for lupus, especially women, as well as those already affected by it.

Published today in the Journal of Nutrition, the study led by Karen Auborn, PhD, evaluated the effect of a supplement of indole-3-carbinol (I3C) - the compound found in broccoli, cauliflower, cabbage and similar vegetables - on the outcome of SLE in mice that are bred to develop the disease genetically. The results showed that mice with lupus lived significantly longer when fed the supplemented diet than did diseased mice fed the normal diet. Some even lived the normal lifespan.

Whether the mice were started on the I3C diet before or after the onset of the disease, the result was the same: there were fewer kidney problems (kidney disease is one of main complications of SLE) and they lived much longer than the control group.

"Mice are not people, of course, but the implication is that a diet rich in cruciferous vegetables could do much to ameliorate the disease," said Dr. Auborn. The findings support the view that I3C may benefit people at risk for SLE as well as those in the early stages of the disease. SLE is often treated with immunosuppressive drugs, which can have serious toxic side effects. By reducing the severity of the disease, I3C may allow a decrease in the dose of immunosuppressive drugs required, thereby reducing toxicity. It may even help prevent the recurrence of the disease.

A person could get the human equivalent dose of I3C tested in the study from about a third to a half of a head of cabbage. So getting the proper amount of I3C from food is realistic, although I3C also is available on the market as a dietary supplement.

According to the Lupus Foundation of America, approximately 1.5 million Americans suffer from some form of lupus, of which SLE is the most common. While it is unknown why women are nine times more likely to develop the disease than men, it is suspected that estrogen plays a role. Research has shown that women with SLE have abnormal estrogen metabolism. In many cancer prevention studies, I3C has been shown to exhibit antiestrogenic activity in the body. The North Shore-LIJ investigators had theorized that because I3C is an antiestrogen, it may prevent, delay, or even represent an adjunct treatment for lupus. They were right, at least for mice that genetically develop lupus.

The North Shore-LIJ Research Institute is planning a human study of the effects of I3C on SLE. Nicholas Chiorazzi, MD, a world-renowned rheumatologist and member of the study team, is working closely with Richard A. Furie, MD, chief of rheumatology at North Shore University Hospital in Manhasset, to make this a reality.

"It will be essential to determine if I3C can have similar effects in patients with SLE. Such studies are more difficult in humans because individual patients with lupus differ in their genetic backgrounds and also because the effects of lupus vary greatly from person to person, at least as far as the organs targeted by the problem," said Dr. Chiorazzi, who is also director and CEO of the North Shore-LIJ Research Institute.

This research was supported by grants from the Ryan Caulfield Foundation, the Willa and Robert Bernhard Fund, and the National Institutes of Health.

About the North Shore-Long Island Jewish Research Institute The North Shore-LIJ Research Institute is among the top seven percent of institutions nationally that receive funding from the National Institutes of Health. Building on its strengths in immunology and inflammation, oncology and cell biology, human genetics, and neurodegenerative and psychiatric disorders, its goal is to understand the biological processes that underlie various diseases and translate this knowledge into new tools for diagnosis and treatment.

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This information is for "informational purposes" and is not meant to be used for medical diagnosis. Always consult your physician on matters such as this.

Lupus: Its Impact on Young People
By Robert H. Phillips, Ph.D.

Introduction
Most of the books and articles written about lupus are targeted for adults with lupus. There is a lot of information about the disease, such as its symptoms, treatment and lifestyle changes necessitated, all of which is very valuable. But there is a unique population that is not addressed often enough in this written material: the young person with lupus.

Lupus is most commonly diagnosed in women of childbearing age, and men are diagnosed as well, although in smaller numbers. But it is important to remember that boys and girls before childbearing years also can be diagnosed with lupus. And although they may experience many of the same problems that adults do (such as pain, other physical symptoms and medication side effects), certain problems are more “exclusively theirs.”

This article will address a sampling of the problems that may affect young people with lupus. (It is not the scope of this article to discuss medical facts. Rather, it focuses on the psychosocial issues that may appear). Rarely will a young person with lupus experience every psychological problem due to lupus. However, it's important for everyone involved – the young person, other family members, friends, educators and healthcare professionals – to be aware of, and sensitive to, these difficulties.

Denial
It is interesting that adolescents, more than virtually every other age group, have a common, non-verbalized (and sometimes loudly verbalized) belief about their medical status: “I'm fine!” They don't want to feel sick; they don't want to be sick; and they don't want to be different. But lupus may throw a monkey wrench into that.

What makes it especially difficult, though, is that unless lupus is affecting the young person so aggressively that they are virtually unable to move, in many cases the young person's attitude will continue to be “I'm fine.” This can be frustrating for other family members, who are trying to be protective and helpful, and for healthcare professionals, who have more difficulty treating a young person if the answers to questions about symptoms are evasive or denying.

School
Adults who work generally have a clear sense of their responsibilities and obligations at their jobs; they know that if they don't work, changes will result – many of which can be difficult and unpleasant. Young people, whose primary job is to go to school, may go because they want to and because they know they are expected to. Yet they may not be aware of the far-reaching implications of inconsistent school attendance.

For young people with lupus, the attitude about school varies. Some are upset and frustrated if lupus interferes with consistent school attendance and schoolwork performance. Others see school as less important and may have few or no qualms about missing excessive time in school.

Young people with lupus may have a more difficult time in school if they have to deal with the cruelty of other children (“What is that ugly rash on your face?”) or the ignorance of teachers (“You've missed too much school work; either get with the program or you're going to fail.”) In addition, because of lupus, young people may find themselves ostracized and even excluded from activities that were once within their physical capabilities.

Peer pressure
Peer pressure may also affect young people with lupus. The need to “fit in” – at its strongest during childhood and adolescence – can be devastating to someone who has a chronic illness with noticeable physical effects (e.g., rashes, bloating, etc.) and behavioral effects (slower, more painful movements, etc.).

It is heartwarming to hear stories of young people with lupus whose friendships continue despite their illness. Yet it is sad to hear of other stories in which the person with lupus is ridiculed and even abandoned by former friends.

Parents
Young people with lupus may have difficulties with parents being overprotective (“Stay inside, the sun is out”), not protective enough (“You want to go to the beach? Do whatever you want”), or insensitive to their needs (“Stop complaining about your pain, already. Get up and finish your school work”).

Parents may be concerned about the effects their child's lupus will have on the family, such as financial issues, problems with or neglect of other children, or even feeling like their independence is being inhibited. Any of these concerns can likewise affect the young person with lupus. Already unhappy because of having lupus, but feeling responsible for problems within the family or with the parents, a young person may feel guilty to the extent that it interferes with their physical and emotional health.
For example, the young person may not tell parents about a serious lupus symptom, knowing it might mean another trip to the doctor or even the possibility of hospitalization.

Siblings
Brothers and sisters of a young person with lupus may be very resentful. Being less able to understand the physical impact of the disease, they may dislike the added “attention” being directed at their sick sibling. They also may not like getting less attention, and may act out in an attempt to regain their “share” of parental interactions. Their resentment toward their sick sibling may be manifested in many hurtful ways, such as anger, ignoring instructions, spiteful behavior, concealing important information from their parents, etc.

A final note
It is difficult enough for anyone to live with lupus, but the young person with lupus has added, age-related problems. Being aware of the potential impact of lupus in young people does not eliminate these problems. But increased awareness can pave the way to a better understanding of the unique needs of young people, and can lead to methods for better alleviating the problems that may occur.

Some Helpful Suggestions for Parents and Other Adults Dealing with Young People
Be Sensitive to the young Person's unique needs. Lupus can be a difficult disease to live with, especially for a child who has fewer “coping strategies” in place. Don't assume that the young person has the emotional strength or the social support network to handle lupus-related problems successfully.

Communicate appropriately. Try to look at any lupus-related issues through the eyes of the young person. See what they see. Feel what they feel. Using anger and aggressiveness in “forcing issues” is rarely productive. Calm, constructive discussion is a much more positive way to address lupus-related issues.

As much as possible, treat the young person like an adult. Plan together the appropriate ways to treat, and live with, lupus. Demonstrating adult-like behavior in interactions with young people is more likely to generate adult-like behavior in return.

Educate significant others. Any individuals who are not familiar with lupus, including family members, friends and teachers, can be obstacles to successful living with lupus. This is especially important in school, since the young person is going to spend a good number of hours there each day. Provide pamphlets and other information to teachers, guidance counselors and even classmates, so that school can truly be a “home away from home.”

Reprinted with permission of the Lupus Foundation of America, ©2001. Dr. Robert H. Phillips is founder and director of the Center for Coping in Long Island, NY ( www.coping.com) . He has been in private practice as a licensed psychologist since 1975 and has published and spoken widely on coping with physical ailments and other psychological topics. He has appeared on dozens of television and radio programs and currently is the host of “Coping Conversations, “ a weekly radio talk show on WKJY-FM (98.3) on Long Island .

Dr. Phillips is the published author of more than 20 books, including the highly popular Coping With Lupus (now completely revised and updated for its third edition); Lupus: Everything You Need to Know (with co-author Dr. Robert Lahita); and his new Successful Living With Lupus: An Action Workbook, published last year. These books, as well as several others, are available for sale from the Lupus Foundation of Minnesota (952-746-5151).

Dr. Phillips has served on the National Board of Directors of the Lupus Foundation of America and currently is a member of the Lupus News Advisory Board.


=========================================================== This information is for"informational purposes" and is not meant to be used for medical diagnosis. Always consult your physician on matters such as this.