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Have you gone to the hospital or had a scheduled medical procedure and had to explain your muscular dystrophy to the medical staff, sometimes more than once? How do you feel when medical staff seem less knowledgeable than you? Do you accept this as something that comes along with having a rare disease? Do you appreciate the opportunity to educate or do you find it tiring and frustrating? Have you ever brought a written form explaining your specific condition? What are some experiences that have occurred in hospital or before surgeries?
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I have gotten to the point when I have to tell someone I have muscular dystrophy that I will repeat myself and even directly say, not MS, it’s MD. With my form of dystrophy, because it is a later in life onset of symptoms, many people, even medical professionals, often are not aware web something like this exists. I’ve heard of primary care physicians even telling people that you can’t have muscular dystrophy symptoms start later in life. It can be a little frustrating but I always feel good that someone became more knowledgeable
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I have realized in life that we tend to know very little about so many things. Especially things that may not affect us directly. I’m sure I’ve made those mistakes many times in situations where I’ve had no idea. We, in some ways, are the ambassadors to the world and I hope our great work leads to not only cures and treatments, but to a better understanding of diversity!
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