Editorial: “Why I’m Stepping Out of My Comfort Zone and Into My Congressman’s Office for Rare Disease

TheMighty published an editorial by Sharon Rose on the need for the rare disease community to advocate in support of the 21st Century Cures Act:

Rare disease has changed my life in many ways, but the most unexpected recent change has been my interest in laws and political issues regarding health care and treatment options. You see, I am a right brainer. I enjoy and flourish in the arts. I’ve never jumped for joy while taking a math or science class. I can recall looking up medical terminology after diagnoses and subsequent MRI or test reports years ago, and how strange it was for me to learn about medicine. I was in a new arena and out of my comfort zone.

However, I realized that in order to advocate for my care, it was a necessary step, and I was finding it interesting! I was being forced to expand in ways I had never imagined. Being creative had always been my focus whether in study, or for fun. But more recently, as a patient and advocate, I’ve experienced another surprising shift in interests. Why, you ask?  Because for the past 6+ years, I’ve been relentlessly and urgently seeking treatments as a patient for Klippel-Feil syndrome, cervical dystonia, Ehlers-Danlos syndrome, and vasculitis – all rare diseases. Time and time again, I have found little understanding or relief. I’ve traveled to five states seeking care. Yes, there are a few great doctors out there. Great doctors who have limited time, limited accurate information, and limited treatment and medication options to offer me as a patient dealing with such an odd laundry list of rare conditions.

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