My name is Maya Markus-Malone. I am seventeen years old and have been living with juvenile arthritis for fourteen years. I have learned a lot from my experiences and wanted to share insight with kids who were just like me when I was three and newly diagnosed - in pain, overwhelmed, and confused.
Before I was diagnosed with JIA/JRA, my symptoms confused and frightened my family. Swelling in my eyes, legs and ankles disrupted my daily life. I struggled to keep up with my twin brother when we would run and play. By chance, I was brought to a Rheumatologist who recognized my symptoms right away. At the age of three I was diagnosed with JIA. My family was relieved to know that many other children similarly undergo what I was experiencing. However, frequent doctor visits throughout my childhood confused my young self; daily medications, blood testing, and bi monthly shots to improve my quality of life all frightened me. Since then, my journey with this disease has made me into the person I am today: healthy, strong, and educated about my condition.
With Allies with Advice, I aim to connect and support the JIA/JRA community. The letter writing campaign shares personal anecdotes from those living with JIA/JRA with recently diagnosed youth. It is my hope that these stories can support patients on their journeys to manage their symptoms and families dealing with the shift that diagnosis brings. If I had gotten similar letters when I was diagnosed, I would have been less confused and more hopeful about a future with JIA/JRA.
Now, I am able to engage in sports with my friends- right now I play squash! From the outside, no one would ever guess that I am living with juvenile arthritis as it does not hold me back from achieving my goals.