This is the forum to share your experience with Uveitis. This forum is intended as an educational forum for the benefit of those affected and those who want to learn more. Off-topic posts will be moved or deleted.
hi, no one else has written on here, but i guess it always has to be someone who starts it.
my name is alka. i'm a 20 year old college student at rutgers university. i was diagnosed with JRA associated uveitis at age 5, which is when i started steroid drops. i had cataract surgery at age 6, glaucoma surgery at age 12, and one other surgery 2 summers ago to removed scar tissue forming on my cornea. two of my three surgeries were performed by my ophthalmologic now, dr. foster (who is the best might i add). i was on methotrexate for about 8 years, from age 10 to 17ish, March of 2008. i will have been in remission for 3 years in March (cross my fingers, knock on wood). and i am doing pretty good,
now, those are the facts. but of course, if you know about chronic illness, it is never that simple. it has its ups and downs, with blood work, and drops, and pills, and bad news, and frequent long visits, and etc etc etc. it was definitely not easy, and it will always be something that affects me, but hey, i can't complain, everything's going pretty good.
if anyone has any questions, i would love to talk. or if they want to talk to me about it in general or share their experience, i would love to hear. i think the most difficult part was the transition from childhood to adulthood and completely coming to terms with the illness and truly understanding it as an adult. i think parents can really make an impact on this for their children, (dr. foster has a great pediatric conference every other year that talks about this).
if anyone wants to ask my specific questions, or wants to talk to me about my experience or their own, i would love that. hope this discussion goes well and starts growing, and im really glad to see pinkburstproject and see how the efforts are spreading. hope to see a lot of people in NYC if i make it to this concert.
You'd NEVER know it to look at Bailey, but she takes Chemotherapy medicines weekly at home & also Remicade IV treatments, which contain Mouse Proteins (She has for the past 4 yrs!) How Awful for a child this young to have to take these strong meds - JUST to keep the bodies moving & More Important- To Keep their Vision! Uveitis has tried to steal her sight for 4 yrs now & is getting closer with each "flare". Can you imagine,... an auto-immune arthritis disease like this,.... can & may, take a child's vision & turn their World to Darkness?!? Its horrible for the kids & Harder on the parents. Many people say,... I Can't imagine my child suffering daily, not being able to move as well as other kids, or in a wheelchair,... or "Blind",... Well,... I CAN imagine it, because, as a Mother, I've dealt with this Fear for the past 4 years with my Baby Girl! She allready has a small cataract in 1 eye & this disease takes over Rapidly causing blindness to these kids! Yes, I CAN imagine it, because it makes me sick to my stomach when she's getting these strong meds/Infusions and/or sick & in pain & there is Nothing I can Physically do! I want to take all this pain from her & give it to myself so she can live a long, beautiful life,... but knowing that I can't,... Well, thats just like a Punch in the Stomach. Many nights I've cried over her & asked God to heal her little body so she doesnt have to suffer anymore. And the WORST part of all this is that the Public doesnt even know Kids get Arthrits too, and its NOT like their Arthrits - Its Much Worse & Progresses FAST to destroy their little bodies. Please support the PinkBurst Project! Help Bring this disease and suffering to light and then into remission! Every child deserves the gift of sight! Visit Baileys Blog for Must See Videos & Pics: www.thewarrens-baileysmama.blogspot.com (Immpossible to fit everything here, so check out the blog if you are interested. Thanks!