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.