Rheumatoid Disease Awareness: My Onset Story, Part II

May is Arthritis Awareness Month. While I personally believe the term "Rheumatoid Arthritis" is imprecise and prefer “Rheumatoid Disease” to reflect its systemic nature, there is no doubt that arthritis is a prominent feature. 

This month I stand with my friends who fight similar diseases that feature arthritis as a major symptom, such as Lupus, Ankylosing Spondylitis (AS), Psoriatic Arthritis (PsA), and Juvenile Idiopathic Arthritis (JIA), among others.

Where I left off my onset story, I was ten years old. Seronegative and with no known family history, I remained undiagnosed. After a drained knee, steroid injections, and immobilization, I returned to ballet, tap, and tennis.

Fast forward to Eighth Grade. I transferred to a new school, with all its challenges. We had an ice storm in Atlanta during Christmas break. Here, ice shuts down the metropolitan area, so I went sledding with friends.

Halfway down the hill on my sled there was an oncoming car. To avoid speeding out in front of the car I veered, hitting a mailbox. I prevented collision with the car. On that note we called it a day, going inside for dry clothes and hot chocolate.

Amelia Island with my best friend Katie. Age 15.
Swollen right knee hidden strategically.

While we defrosted at my best friend, Katie's, house, my knee felt odd. I propped it up; it was swollen to grapefruit size and hurt a lot. I knew it was bad news.

The next day I saw mom's orthopedic doctor again. He referred me to a pediatric orthopedic surgeon, who concurred that I had likely torn my anterior cruciate ligament (ACL). I had arthroscopic surgery the following day to investigate and fix the damage done. The surgeon was prepared to repair the ligament with a bovine one if torn. What he found when he went into my knee was a surprise.

He found a stretched ligament, with damage to cartilage and synovial tissue that had all the hallmarks of Juvenile Rheumatoid Arthritis (JRA), which required a synovectomy. This diagnosis was confirmed when I used crutches during recovery and my other knee "blew up.” I was immediately referred to a pediatric rheumatologist. 

Fresh off of crutches (and braces!).
Age 14, with my 9-year-old sister.

My bilateral arthritis symptoms led to a diagnosis of pauciarticular Juvenile Rheumatoid Arthritis (JRA). This is Rheumatoid Disease that affects three or fewer joints in a child. My parents and I were told I would likely outgrow it, or that it would "burn out" by the end of adolescence. Treatment began with eight Bayer aspirin per day during my six-month long recovery from surgery. I was sidelined indefinitely from dance, tennis, and P.E. to preserve my stretched ligament and prevent further damage.

My Junior Prom, Age 16.

We believed my physicians when they said that I should outgrow my disease. I made plans for my future, working around my limitations. I focused on studio art and science, volunteering at my pediatric sports medicine PT. My astronaut/scientist dreams evolved into doctor/artist ones.

We all were caught off guard when Rheumatoid Disease would prove to derail my life repeatedly, leading me down many unexpected paths and teaching me fresh lessons.

My Onset Story, Part I