Abby's Story

AbbyMy name is Abby, and I have been the face of arthritis since 2011. 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 developed uveitis in 2017, 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.

In June 2018, after three years of symptoms, I was diagnosed with Crohn's disease. This means that I'm not able to the NSAIDS that were controlling my juvenile arthritis. In August 2018, when my Crohn's, uveitis, and juvenile arthritis were all flaring, the doctors decided it would be best for me to start a biologic. My mom will give me a shot at home every two weeks, which stinks, but at least I will not longer have to swallow the gigantic pills they gave me for my Crohn's. I hope I'll be able to start the new medicine soon, so I can start feeling better.

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.