What I Want People To Know About Juvenile Rheumatoid Arthritis

Pain is a funny thing. It can often be alarming to the feeler, but it really is hard to see it in others. Pain is invisible. When I was thirteen, I was in a lot of pain -- a lot of stiffness and difficulty moving. But then, I reasoned to myself, a lot of other middle school girls were feeling growing pains and cramps. I was a very active child who always played travel soccer, so pain was to be expected. Rheumatoid arthritis was not.

Let me backtrack. Before I received my life-changing juvenile rheumatoid arthritis diagnosis in January of 2018, I has already experienced odd medical symptoms that could never be explained. In third grade, I got chicken pox when no other child my age or anyone else in my family had gotten it. In fifth grade, I got both influenzas and awful full body rashes that came with them. Every time I would get sick, there wasn’t an explanation beyond the fact that I was sick, so it was assumed I had an immune response, but that never led anywhere. I baffled my parents and doctor every year.

Our first lead was in the eighth grade. I had very red eyes that could not be explained until we went to an eye specialist and was told I had uveitis, a common auto-immune disease that attacks the eyes. From there, I was referred to a pediatric rheumatologist at Valley Children’s. I remember that room so vividly. I saw a poster with a kid on it with inflamed joints and everything clicked in my brain and I excitedly asked my Mom, “Do you think that’s what I have?” I wasn’t excited about the idea of having arthritis, but rather the idea of knowing what was wrong with me after all of these years. We talked to the doctor about one of my fingers being disfigured from inflammation and stiffness all over my body, and I was promptly diagnosed with juvenile rheumatoid arthritis.

After my diagnosis, I quit soccer and was put on all sorts of medicines to help regulate my body’s immune system. Once we found a medication that worked, I participated in occupational and physical therapy (which was wonderful). All of my care providers were fantastic and helped me get back to my normal life. After almost five years of trying different medicines and therapies, I finally have some control over my arthritis and will be going off to college to study pharmacological chemistry at UC San Diego, where I chose to help other kids such as myself find medicines that work for them. 

Makayla was all smiles at her high school graduation

Once I was diagnosed with rheumatoid arthritis, I learned a lot about the condition that I think is important for other kids and adults to understand, too.

• I learned the diagnosis is not from a lack of moving or too much moving, but rather, it is caused by an immune system that is so strong that instead of attacking the disease, it attacks the joints. I also learned that anyone of any age can get it, from a baby to elderly people.
• Rheumatoid arthritis is different than the arthritis that older people get from decades of use on their joints.
• Rheumatoid arthritis can attack things other than the joints. It can attack ligaments, tendons and other parts of the body.
• Rheumatoid arthritis is just one of many diseases that are autoimmune disorders, and autoimmune disorders tend to run in families.
• For kids with rheumatoid arthritis, take advantage of all the things out there that are to help youth. Reach out to your school to set up a 504 or IEP and make sure to learn about all the programs and gifts that the Arthritis Foundation offers for students. There are also countless scholarships for college for students with rheumatoid arthritis.

The main thing I learned from this diagnosis – and want to make sure other kids know, especially those experiencing the same diagnosis – is to give yourself grace, to take care of yourself and to listen to your body, because nobody knows you quite like you!