Hi, my daughter was diagnosed with JIA polyarticular and Hypermobility in year 8 at school and takes Methotrexate 30 mg, and is now in second year of Uni life. (Wrists, elbows, knees, ankles, joints either side of sternum and jaw have all been affected at some point or other).
She has had joint injections, steroids and at one point Methotrexate and another drug (name escapes me Begins with H at the same time, when the disease seemed to be really bad) presently only Methotrexate.
Fingers crossed everyone...the last two years free..her advice would be, be happy, surround yourself with friends,keep busy (for her, Pilates, hill walking, new to climbing and cycling a bit to get about and walking) of course lots of social events) and much laughter.
And maybe being at Uni in a costal town??
In retrospect I would like to share some ideas of possible ways to help other parents through "things":
How to inform the school: Print off information about JIA, and quote the facts about the low numbers of children who are diagnosed..12,000 I believe, put in a personal bit about how it is affecting your child.
At secondary School give a copy to each of the subject teachers, it will save the form teacher a job, and satisfies your mind everyone is informed.
Speak directly to the exams teacher to discuss access arrangements, they are fantastic, you should get extra time and/or possibly rest breaks. This also means the exam will take place in a smaller room which will be warmer, my daughter found the large halls to be too cold for her sitting long periods.
Get a "let out of class early " permission arrangement for painful/times, to avoid crowds/allow extra time to get to next lesson.
Let the form teacher and pastoral teacher (as well as nurse) know if steroids are being taken, they can inform others...as sometimes these can affect mood.
Children with JIA, are bright and very caring of others. My daughter is my heroine I love her dearly and am so so proud of her, despite tough times, she is achieving and continues to be an inspiration to me.
That's all for today, I will share any other useful suggestions as I think of them.
Empathy to all other parents. And my heartfelt respect to all with any form of Arthritis. Kind Regards. Mum V.