Alex Howard is a compassionate, funny guy, to whom it is incredibly easy to talk. Alex has MEPAN Syndrome – one of only 18 people in the world with the condition – and Ehlers-Danlos Syndrome. MEPAN Syndrome is a rare genetic neurological disorder that usually presents in early childhood, but Alex was not diagnosed until age 27.
Alex’s great sense of humor definitely helped him cope with being undiagnosed for his first 27 years and continuing to live with uncertainty. He explains that living without a diagnosis and being the kid in school with “an undiagnosed neurological condition” tends to bring with it loneliness and isolation, and Alex indeed experienced these feelings. Films and movies have long been part of Alex’s coping mechanisms, along with, of course, jokes. On bad days, Alex has found solace in villains in movies like, The Joker. He joked, “Well, at least I’m not that guy!” [continue reading…]