I was diagnosed with juvenile dermatomyositis when I was four years old. Of course, my mother was devastated, as any parent who was told that their child was sick would be. However, she ensured that I received the treatment needed to manage the disease and hopefully send it into remission through that devastation. The condition was still present throughout my elementary, middle, high school, and college years, but it didn’t affect my mobility and energy level as it presently does. In fact, I played basketball and engaged in other sports during my high school years. Fast forward to 2010, I noticed that my energy levels were lower, and I was moving at a much slower pace than I was used to. I was discouraged by the sudden decline in my health. I knew that I would need ample support through that period, and as a result, I reached out to Suzan Fischbein, LCSW, who coordinates and runs the HSS Myositis Support Group every month.
The Myositis Support Group at HSS was everything that I needed and more. Each meeting was educational, inspiring, and motivating, and that had and has everything to do with Suzan. She cultivated an environment that promoted empathy, inclusivity, privacy, and respect for all. That environment allowed us to exchange health regimes and new ideas on managing this disease. She created a safe space that allowed us to share our concerns, doubts, and hopes of remission without the fear of our confidentiality being broken. Suzan made sure to secure knowledgeable health care professionals that addressed this disease's physical, mental/emotional, and spiritual aspects. They were experts in their area of health and provided current and valuable information about myositis and methods on how to live the most fulfilling life with it. Suzan and the Myositis Support Group were (and still are) significant resources in helping me navigate the then-new reality of this condition. If it wasn’t for HSS making this group available, I might have lost hope when this condition took a turn for the worst.
This disease is still active, and my diagnosis has since changed from juvenile dermatomyositis to autoimmune necrotizing myopathy. However, I maintain my hope for healing from and remission of this disease, and the HSS Myositis Support Group is one of the factors that helps me do so. I’m truly grateful to HSS for providing such a vital resource for dealing with all myositis forms. I can honestly say that the HSS Myositis Support Group helped me get Back in the Game and keeps me in the game!
All by Physician