Howlin Wolf
I am a 48 yr old male, living in Canada, and was diagnosed some years ago with Desmin Storage Myopathy. In reading the message threads I am struck by what I already know, how little info there is about the disease. From many years of attempting to find a diagnosis and from genetic counselling once a diagnosis was established this is the little I know. It is genetic and recessive. The disease manifests itself early in life or during middle age and later years, like myself. From the little that is known it can progress very quickly or slowly. Mine (a stroke of luck?) is of the slow and long lasting but relentlessly progressive variety. I first began to notice changes when I was about 36. Two or three years later the changes were significant enough that I understood something was not right. I began to persue a diagnosis in about 1992 but did not receive one until about 1998. When finally a geneticist in Montreal Canada was able to establish a true diagnosis. The info I can provide is more about the experience of living the disease for so many years rather than it is medical. One of the message threads asked if depression was part of the disease. Depression can be part of any major disease or negative event in ones life. From what I know about the disorder depression is not a specific symptom of the disease, it can however be a side effect. I would be pleased to talk to any of you. Thank you, Howlin