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twicks1003

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1 reviews

Review for Multiple System Atrophy Coalition, Charlotte, NC, USA

Rating: 5 stars  

My husband Mike was diagnosed with MSA-C in June 2015. It took several years and tons of tests to try to figure out what he had. All the doctors were able to tell us was what he didn’t have. During one of our visits with a movement disorder neurologist that we had been seeing for six months, she was finally confident in giving us a diagnosis. I remember her saying it was MSA, a very rare brain disease that had no treatment and no cure. And it was terminal. We were in shock and wanted to know more about Mike’s condition. We found the MSA Coalition website invaluable. It gave us a lot of information and links to many helpful sites. It also kept us informed of upcoming events and research information and how to get people involved in fund raising for research for this rare disease. It also gave us information for support groups for both the patient and the caregiver. We would have been lost without this resource.

Role:  Volunteer