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Are you part of a national registry for your specific type of MD? I believe in the Facioscapulohumeral Muscular Dystrophy Patients and Family Members Registry. I fill out yearly forms and up to date on new findings and research.
Do you have a rare form of MD but are not part of a national or international registry? I like the registry because I look back and see how much my body has changed and maybe find a specific connection to things about my MD.
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I’m not sure if there is a national registry for Myofibrillar myopathy. I know it’s rare and I never see articles or information about it posted on the site. It’s kind of frustrating to have a type of MD that you can’t find any information on. All I get is from my neurologist. I guess I could ask him if there is a national registry. It would be nice to be able to get more information.
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Tracy, I can only imagine your frustration. When I was diagnosed at 12, I had no one and knew no one with the disease. I was young enough that I pushed it out of my mind until I started to become visibly affected. I think the MDA or NMD United has a person you could contact to see if a registry is coming out or if one could be made. Maybe it just takes someone asking and getting the ball rolling.
Here is what I found: https://www.ncbi.nlm.nih.gov/gtr/conditions/C2678065/
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Here is what I found: https://rarediseases.info.nih.gov/diseases/9676/miyoshi-myopathy/research
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