Childhood meant countless doctor and hospital visits, leg braces and corrective surgeries to perform ankle fusions, tendon transfers and bone grafts. My symptoms worsened considerably in my 30s and 40s. My balance has been affected and it’s challenging to safely walk across the room. I’ve had three falls resulting in broken bones over the past seven years alone.
Daily I deal with considerable pain, numbness and instability, along with fear and uncertainty of what my future holds. My disease has progressed so far that I now must use a mobility scooter or motorized wheelchair to move around. Accepting this has been very difficult because I feel like I’m losing my sense of self. Fighting heavy depression has been a constant over the past few years.