Susacs Syndrome

The story of Howard

Hi, My wife is 54 years old and was recently diagnosed with a very rare Auto-immune disease called Susac’s Disease. She has been hospitalized for a total of 6 weeks in the last nine weeks. She has what they call the TRIAD of symptoms. The Lesions on her brain, affected hearing, and visual problems. Some of the affected people go blind, have permanent loss of hearing, permanent memory loss, and may never walk right again. Very, very, few people ever get well enough to work again! Very little is known about the disease and even less about how to effectively treat it! There are a few doctors around the world that do know much about it. Each person diagnosed responds differently with the different treatments tried with them. Basically, it is trial and error treatment.
My wife has permanent hearing loss, very confused, major memory loss, has to be fed, and can not walk. She does not understand what is said to her. She now needs 24/7 care but is being turned down for Medicaid, even though she is obviously disabled. We have Social Workers, and State Legislators, working on this trying to help her get to a badly needed Care Center. As for now, I have to take her home to try and care for her until something changes or we are able to have things expedited!!
We ALL must push for a better Medical and Disability system!! People like my wife are slipping through the proverbial “Cracks” !! Please be Aware of Rare diseases and tell your Legislators to push for us that are involved!!