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.
Wednesday, June 17, 2009
Monday, March 23, 2009
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.
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.
Friday, January 02, 2009
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.
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.
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.
Sunday, September 28, 2008
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.
"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.
Thursday, May 15, 2008
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.
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.
Saturday, March 08, 2008
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.
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.
Friday, January 04, 2008
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.
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.
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