I just found out from my sister today that my 18-year-old niece has just been diagnosed with lupus, after having some bloodwork done at her pre-college physical.
I’m off to the search engines, and Medline, and such, to see what I can find out from them. Do any of you have personal experience with lupus (either for yourself, or a family member?) I’m trying to get a grasp of how serious an issue this is, as far as quality of life, mortality, etc., as well as treatments.
I’m also interested if this has led to any insurance problems with anyone. She’ll be on her parent’s insurance through college, but after that she’ll be on her own. Will this diagnosis on her records make her uninsurable, at least under reasonable terms?
I had a girlfriend in 1985 who had lupus. We aren’t coupled any more, but she’s still alive and kicking, having married and given birth to a cute little boychild.
It’s an auto-immune disease, and I believe most of the diseases in that category vary all over the map in terms of how severe they hit and how rapidly they progess. For most sufferers, even if the disease is officially considered “terminal”, they live on and cope and have full lives (or empty boring ones, as may be the case) and eventually die of something else.
She should join a lupus support group online, I think. My current girlfriend has MS (another auto-immune) and says you learn 10 times more from other experienced folks with the same ailment than you’ll ever learn from the medical specialists.
I have lupus. I was diagnosed about 14 years ago. My initial symptoms were a low-grade fever, a strange rash, severe fatigue (physically could not stay awake for more than about 5 hours at a time), arthritis (which started in my wrist and eventually effected my whole body to the point of not being able to walk). It took them a few months to diagnose, but the dermatologist actually came up with the lupus idea after seeing the rash and they did bloodwork for that.
I was treated at Children’s Hospital in D.C. by Dr. Lipnick in the rheumatology department. He put me on prednisone and an arthritis medication (can’t remember what it was). Within a few months, I was feeling a lot better. I came off all medication by the time I turned 19 and, at almost 29 (August 10!), I haven’t come out of remission. My doctor told me I may never have any major symptoms again if I stay out of the sun and make sure I don’t ever get too stressed out (plenty of sleep and all that). I’ve found that when I do get run down, I have minor arthritis pain, but if I take a day off and sleep, I feel better. I have not had children yet, and I am a little worried about the stress on my body that that will cause, but I have a good doctor whom I trust, so I’m not too scared.
My main advice to your niece would be to not make the disease a part of her identity. I’ve seen many people who are sick who go from Jane, who happens to have lupus to Lupus Jane. She’s going to have a million pokes, prods, tests, pills, exercises and doctors staring at her. If she can do what she’s told but maintain the attitude that this is just an inconvenience rather than Her Life’s Biggest Challenge, I think she’ll do better. I did. Throughout my teens, even when I was still having trouble just walking, I continued to exercise, play piano (compete, even), hang out with friends, date and all the normal stuff. When the doctors gave me information for vocational training in case I wasn’t going to recover much, I handed back my straight A’s and SAT scores. I really thought they were just being melodramatic.
As far as insurance, yeah, she might have problems after school getting individual insurance. I’ve never had a problem when it was offered through work, but when I graduated college and didn’t have a benefit-providing job, I had to just wing it. The insurance providers all turned me down and suggested I go through the state to get on the same plan that AIDS patients get on (for about $800/month). It made me extra-eager to find a good job.