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.
Saturday, October 20, 2007
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