Stiff Person Syndrome

Hello, My name is Kathleen Sheehan. I am a 66 year old retired Army Colonel, who was diagnosed in 2010 with a rare disease that has no cure, called Stiff Person Syndrome . This disease has progressed and I am now completely bedridden and require 24 hour care. I need assistance with almost everything. I don’t have a very good support system and get no assistance from the Veterans Administration because I was diagnosed after my retirement and this illness is not felt to be service-connected. I have to pay out of pocket for my caregivers and cannot be left alone. This has just financially broken me. A lot of people are not aware of this disease, and the pain and suffering that goes with it. I live alone in a house that I rent and I have no family support. The only support I have are my caregivers and a couple of close friends. I am trying to raise money to help pay for my caregiver’s salaries and stay comfortably in my home. I appreciate any financial support that will help me continue to stay in my home and get the care I require. There has been increased awareness of this disease when Celine Dion was recently diagnosed with Stiff Person Syndrome. I am grateful for any support. Thank you.