Escaping Arthritis Through Research
Hayley was diagnosed with juvenile idiopathic arthritis (JIA) at 13 years old. It might be shocking to learn that babies and children can get arthritis, since we often think of it as a disease that happens much later in life.
However, over 6,000 children under the age of 15 live with diagnosed juvenile idiopathic arthritis in Canada. And while many young people outgrow it, others do not. Hayley is in the second group.
This year, Arthritis Research Canada’s Arthritis Awareness Month campaign focused on how research helps people navigate an arthritis diagnosis, which can be confusing and overwhelming.
Hayley has now lived with JIA for almost half her life, but she hasn’t let it stand in the way of achieving her dreams. She is now in medical school and reflecting on how arthritis research has changed her life. Here’s what she had to say:
The most obvious way that research has improved my experience with arthritis is through the development of my medications. Initially, when I was diagnosed with JIA, I was started on oral methotrexate. While it helped with my joint pain, I had very negative side effects. I always took my pill on Friday evening so it would not impact my school work. I have vivid memories of spending my Saturday morning lying on top of a pillow with excruciating stomach pain.
Over the years, we tried various medication regiments. I am now very well managed with subcutaneous methotrexate (which I have found much easier on the stomach), and subcutaneous Enbrel. These medications have been life-changing for me. While I am sure I still experience more joint pain than the average healthy person (it is hard to know after all these years), I often forget about my JIA.
I have very few restrictions. The only things I really cannot do are activities that put significant stress on my hands and wrists, such as rock climbing, biking downhill, and putting my whole body weight on fully extended wrists. As I learned in medical school, the process to develop and approve these medications is extensive. I am so grateful that research, conducted by brilliant scientists, has led to the advancements that have provided me with an almost perfect level of function, and a pain-free life.
Involved in Research
After I was diagnosed with JIA, I signed up for every single research study available. I was very lucky to have a mom who did not mind taking me to extra appointments to do various scans, lab work, and surveys required for the studies. She understood what this meant to me. I always said, if I am stuck with this diagnosis, someone might as well benefit from my experience. Participating in research allowed me to feel useful. I felt comfort in knowing that others were going to gain from my struggles with JIA. This helped me to remain optimistic about my condition, even when I was having bad days. It also gave me insight into the research process, and the critical importance of research in medicine. This experience continues to motivate my own medical research today.
The opinions expressed in this piece are not those of Arthritis Research Canada. If you have questions about your medications and treatment plans, please consult your family doctor or rheumatologist.