Abby's Story

AbbyMy name is Abby, and I am the face of arthritis. My knee became swollen when I was 19 months old. It hurt to walk and crawl, and I woke up at night crying in pain. The diagnosis took 4 weeks, 11 x-rays, 9 vials of blood, 2 blood cultures, 6 visits to 3 different doctors and the CHOP emergency room, and 3 weeks of antibiotics to rule out Lyme disease.

I had arthritis in my right knee, ankle, and pinky toe. In addition to attacking my joints, it attacked the muscles in my right leg. I changed from a non-stop talking/singing girl that always ran around to a quiet, reserved girl that always wanted to be carried.

I started on prescription NSAIDs immediately, had a procedure where they removed the fluid from my knee and gave me a painful steroid injection, and started physical therapy twice a week. There was a lot of improvement, but I still had active arthritis and pain. Our weekly trips to grandparents or the zoo was traded for twice weekly therapy sessions, 4hr round trip visits to the rheumatologist every 6 weeks, and eye exams every 3mos.

After several months, I was switched to a stronger NSAID. It tasted awful, but I took it because at 24 months old, I already understood that it made my pain a little better. The symptoms and pain continued. By this point, I didn’t remember ever not being in pain. I accepted that constant pain was normal.

The arthritis remained active, and the doctor wanted me to start on methotrexate (low dose chemotherapy medication). Then suddenly, my arthritis became inactive. The doctor was optimistic, but stressed that I could flare at any time and that we’re never out of the woods. I had to continue physical therapy twice a week for another 5 months in order to rebuild my right leg muscles.

No one knows why I flared the first time or why I went into remission. After a few years in remission, I flared again and was put back on medication. I've had a couple of flares since, and I recently developed uveitis, which is inflammation in the eyes caused by my juvenile arthritis. I've also been diagnosed with Ehlers-Danlos Syndrome Hypermobility, which isn't uncommon in kids with arthritis. Despite this, I know how lucky am. Although I have juvenile arthritis, my symptoms are less severe and more easily controlled by NSAIDs than most other kids with arthritis.

People think kids outgrow arthritis, but that’s not true. More than half of kids with arthritis go in and out of flares throughout their lives.