Hello!

I was looking for a support forum when I found this one.

I was diagnosed with systemic-onset (the rarest type; it affects the whole body) Juvenile Rheumatoid Arthritis in Kindergarten. It affects all my joints and all my organs. I'm now fourteen years old.

I'm almost completely in a wheelchair. My muscles are even beginning to get weaker, and I often collapse against a wall not only from the pain but the muscles in my legs going numb.

I have difficulty doing a lot of things with my hands such as writing, zipping & unzipping, buttoning & unbuttoning, opening doors (very sensitive wrists), turning knobs, dressing & undressing and a lot more.

I get very sick on rainy days to the point I can't get out of bed or I will throw up; which results in me calling my mom at six AM to get me an ice pack.

I also have quite a few joints fusing together, including my right knee. On top of it all it's also caused me to have 20/400 vision that continues to decline.

We're hoping to get me back to a Rheumatologist, get me an electric wheelchair and apply for a service dog (I can't go to school or get a job due to my "diseases") by the end of the year. So, there's just a little about me.

Welcome to the group!! I'm sorry that you have been affected so badly by this illness I have to say, though, that I admire your determination!!! I look forward to getting to know you better!

Hugs,

I'm so sorry that you are going through all of this at such a young age. It sounds as if you have good support at home.

How did they find out you had this kind of JRA? My 2 year old has JRA nad I'm trying to get as much Information as possible. She is taking ibuprofen but it doesn't seem to work at all. She is still in alot of pain and barely walks. Her back seems to hurt too. She will not lay flat when she is being changed.

What were your symptoms? Did you have blonde hair and blue eyes? Her rheumatologist said that it is more common in little girls with blonde hair and blue eyes....my daughter has both!

I hope that you feel better soon. If there is anything I can help you with, please let me know. Best wishes to you!!!

I don't have a good memory so I can't really remember - my mom said he could tell just by looking at me from how swollen I was but she doesn't remember what kind of tests they did to completely determine it.

I do remember doing a lot of crazy and annoying tests. I even became their guinea pig for a few years and would get blood drawn, shots given and tests done every few weeks or so. I got so sick of it and made my mom stop taking me to the things though.

My mom said I was swollen as a baby, though it was maybe a few days into Kindergarten that I suddenly had a really swollen ankle and couldn't walk. At that point we went to the doctors and they did tests and when the tests came back I was positive for JRA. I had blonde hair and blue eyes too, though I've since outgrown them and have dark brown hair and green/brown/hazel/color changing eyes.

Post edited by: Hoshii, at: 06/18/2008 06:45

My daughters appt. didn't go so well. She is worse sinnce they put her on medication. Now they want her to have surgery on Tuesday. They will put her to sleep and give her shots of medication in the swollen joints. She has 6 of them....her knees, ankles, toes and fingers. Did you ever have that done? If so, did it work?

Thank you for the information and for being here. I'll talk to you soon. Take care.

Have always had one in my life. Now I have the baby Peyton, Jessie ( 5yr) Border Collie and Gussie my 15yr old Aussie/Border mix!

Sorry off topic but I saw the aussie thing