Our new video explains the basic facts about facioscapulohumeral muscular dystrophy–the symptoms, how it affects those who have it, how it is inherited, and how many people are affected. Watch it and share it to help educate others about FSH muscular dystrophy.
Thank you to Taylor Toole for compiling this video. Image and video credits: Romana Vysatova, Brent Rowlett, Randy Schafer, Ellen Feldman, and Martyn Kitney.
I would like to thank those responsible for this excellent video! Many of my friends have seen this, and all spoke of how much better they understood the disease. This is an awesome way to educate and inform those around you, which goes a long way in raising public awareness!
Very informative
My husband is a long-term care resident at a nursing home because of his advanced FSH MD. The nurses and aides don’t know how to deal with him because he’s not a cookie-cutter patient, i.e. stroke/dementia/Alzheimers sufferer. His brain is perfectly fine; often when a new staff member first encounters my husband, s/he is surprised at how aware and coherent my husband is. We are trying to get as many staffers at the home as possible to watch this video, but it’s an uphill battle, even though we’ve assured them that it’s short and won’t take up much of their time. I want to thank you profusely for producing this video, giving us a way to explain and express our needs and problems in terms that both medical people and every day “civilians” can understand.
We’re happy that you found the video helpful in your efforts to educate your husband’s care providers.
Wow! I don’t think I’ve ever heard about this. It’s heartbreaking. The video was very informative