Information on Juvenile Rheumatoid Arthritis?
Dοеѕ anyone hаνе personal οr professional experince wіth thіѕ condition? Mу daughter mау hаνе іt, аnd I wουld lονе tο know whаt kinds οf things tο expect, whаt mіght happen, аnу information really. Shе hаѕ аn appointment wіth a Rheumatologist іn June.
I hаνе read information аbουt thіѕ οn thе web, I аm hoping fοr more personalazied information. Lіkе hοw quickly іt саn progress, whаt tο look fοr , οr watch fοr, problems οr complications tο prepare myself fοr, ect. Jυѕt something more personal thаn a medical description οf іt.
Thе best information I hаνе seen οn thіѕ condition іѕ аt : http://www.rheumatology.org/public/factsheets/arth_in_children.asp?aud=pat#1
I have no personal experience with this disease. However I can tell you in layman’s terms what it is. You can also find answers on other websites such as Webmd or discovery health. Common abbreviations are R.A.
R.A. is categorized as an auto immune disorder. This means that for some reason yet to be discovered, a person’s immune system goes traitor and begins to attack their own tissues as enemies. There is as of yet no cure for R.A. or other auto immune disorders. Treatment is purely symptomatic and may include immuno supressants and other complimentary treatments to help preserve remaining tissue and to improve function.
You might also check out the arthritis foundation. I saw recently on the national news that a young man was given a lap top with voice recognition software so that he would be able to learn without the discomfort of writing or typing. They would also have more information.
My sister has it she’s 60′s and she got it really bad in her arms and hands to the point where she’d scream with pain.The doctor [specialish] is giving her a new pill that just came out for cancer and it’s suppose to help this.She’s been taking the pill not quite a week and her pain has left her[thank God].Her hands are still quite swollen yet.But she has to go for blood work every other week while She’s onto it as it could cause cancer in her bladder.But her pain was so bad she’s chancing it.
I have RA, and was diagnosed at 22 (one year ago), so I wasn’t classified as JRA, even though I think I had a few symptoms as a child. http://www.arthritis.org is a great resource for all types of arthritis – there is a section with information about JRA and the different types, they always keep things updated with new developments, and there is an excellent resource called “RA Connect.” There is a discussion board there where there are lots of really helpful people, some with JRA and some with RA, that are happy to share their experiences and suggestions with how to cope. I suggest you make a post on that board, introduce yourself, and you will get at least 10 answers giving info and support within a day. If your daughter is old enough, I would suggest you have her visit it as well.
If I were you, I would try to move up the rheumatologist appointment if possible – it is very frustrating to wait to start therapy. I know it can be difficult to get appointments with some offices, but the sooner the better. This is a difficult disease that takes adjustment – the sooner you get a proper assesment, the sooner you will know what to expect out of life and learn how to deal with it.
It is often difficult to live with RA or JRA, but many children adapt well and live full lives. Some may also go into remission in adulthood – on the arthritis.org site there is an inspiring article about a woman who had JRA, then went on to compete in the Olympics. Also, the new biologic meds are promising. They may not be just right for your dauhghter yet, depending on age and symptoms, and your doctor will decide the best course of treatment, but I have had great relief from my RA with Enbrel. These meds are injectable, were developed specifically for RA, and may stop the joint damage as well as provide symptomatic relief. Your doctor will be a great source of info once you see him or her, but you are on the right track to getting educated about it so you can make the most of your appointments.
I really reccomend you visit the arthritis.org site and discussion board – you will get all the scientific information, but it is really the best place to find personal stories and support.
I hope your daughter has luck with her treatment!