Muscular Dystrophy

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    If you are living with a late-onset rare disease, what advice do you have for others navigating their daily life?

    From family planning and relationships, to employment and retirement, living with late-onset rare disease can affect every single touchpoint in a person’s life (much more than others even realize).

    But there’s strength in community, so we'd love for you to pay it forward. What’s a piece of advice you can share about your day-to-day experiences with navigating rare disease? What’s helped? What hasn’t?

    ✏️ P.S. We’re creating a story with one of our partners, Catalyst, to raise awareness around late-onset rare disease. Your answer may be used in an upcoming editorial story on The Mighty.

    #RareDisease #LambertEatonMyasthenicSyndrome #MyastheniaGravis #CheckInWithMe #Spoonie #MentalHealth #LungCancer #SmallCellLungCancer #MuscularDystrophy #IntravenousImmunoglobulin #NeuromuscularDisease


    Struggling With My Diagnosis

    I have recently been diagnosed with a rare form of #MuscularDystrophy called oculopharyngeal muscular dystrophy, or OPMD for short. To be honest, I’m struggling with this. I’m concerned not only about the progression as I age, but also how this impacts my family.

    Although I’ve been experiencing symptoms for many years, it took my ophthalmologist to suggest I might have this disease. I followed up with a neurologist, who also believed I had this disease. I then got genetically tested and there was no denying what I had.

    Even though I had a good idea I had OPMD, I was still rocked by the definitive diagnosis. It made me sad, partly because I had to figure out how to navigate this, but also knowing that my siblings and children have a 50/50 chance of inheriting this.

    It’s never easy learning to live with limitations is it? I have to always be mindful of what I’m eating because swallowing difficulties has become a normal thing. It’s never comfortable trying to get food to go down without choking. It makes it a real challenge when I eat out or eat with other people at their home.

    Another challenge is the muscle weakness in my upper legs and arms. I usually do ok walking in my home, although I use a rollator on more challenging days. I have to use a cane going up and down stairs, and since I’m always with my husband, he makes sure I’m safe. The leg weakness also means that if I fall I cannot get up on my own. Someone has to help me stand.

    I do tend to spend a lot of time laying down, but that’s when I can do my best thinking and writing. I also listen to a lot of audio books and have a couple of coloring apps that I enjoy. I miss being able to do the things I could 25 years ago, but do my best to push myself a little to do things I’d rather not do.

    I’m always trying to figure out ways to adapt to my new normal and stay as active as I can, understanding that there will be bad days and days that aren’t so bad. No one wants to be diagnosed with #MuscularDystrophy in any form, but I’m thankful to have found a community where I can find support and get great ideas on how to move my life forward and deal with the increasing challenges

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    What advice do you have for someone who is newly diagnosed with a rare disease as an adult?

    Getting a rare disease diagnosis can be tough, but adding one on top of the complexities of adulthood can be even more challenging.

    What advice do you have for an adult who’s been newly diagnosed with a rare disease? How did you “adjust your sails” and adapt to make room for it?

    ✏️ P.S. We’re creating a story with one of our partners, Catalyst, to raise awareness around late-onset rare disease. Your answer may be used in an upcoming editorial story on The Mighty.

    #RareDisease #MuscularDystrophy #LungCancer #Spoonie #MentalHealth #LambertEatonMyasthenicSyndrome #MyastheniaGravis #neuromuscularimmunoglobulin #CheckInWithMe #SCLC


    Staying positive

    Staying positive can be so hard when you know you have a degenerative disease like muscular dystrophy. Some days it's really hard to just get through the day. I try hard to be grateful for all the things I can still do, I'm spite of my current limitations. I'm taking this adventure one day at a time and always remembering that today is a good day to have a good day.

    #StayPositive #MuscularDystrophy


    I’m new here!

    Hi, my name is Sami46. I've been diagnosed with anxiety depression social anxiety ptsd ocd osteoarthritis neuropathy ckd scoliosis muscular dystrophy diabetes.I want to know how others deal with there diagnosis and how it effects daily life.

    #MightyTogether #Anxiety #Depression #Migraine #RheumatoidArthritis #PTSD #BipolarDisorder #OCD


    Superstar Heroes

    Giving birth to my son was such an emotional moment like all births. Being told shortly after that he has a genetic syndrome just by his appearance was even more emotional for me. A few months have passed, multiple specialist later the results were in. My son who we call Aj had a full whole genome sequence study on his DNA and it came back with no real answer. The changes that were found in his DNA had little to no evidence to support them and that made his condition a #RareDisease . I mean extremely rare! As the years came and went Aj was diagnosed with plenty of other medical disabilities. Some were more challenging than others but here are just a few to name; ADHD, Autism, #Microcephaly and more. As a mom I wanted to educate myself as much as possible so that I can help Aj get the best treatments, therapies and at home care I could. I also wanted Aj himself to understand that he had several disabilities. I encouraged Aj to strive like any other child and that his disabilities were limiting him in some areas but if he poured his heart into anything that his outcome would be limitless. I went to the library, book stores and online book shopping trying to find stories that were relatable and could help me explain Aj’s medical conditions without boring him. That was really hard I couldn’t find books that shared more than one condition at a time. So I wrote one! As fist time Author I became intrigued about helping parents, educators, physicians explain disabilities and life in general of a special needs child. I started with a series titled “Superstar Heroes” Aj goes to camp is the first book in the series I have self published this book in both English and Spanish. It is available on retail online book platforms. I have taken the negative and turned it into my positive story . I continue to educate myself, others, Advocate for children with special needs and also Interpret for Spanish speaking individuals so that they can better understand their conditions. Aj goes to camp features 6 diverse children, 6 disabilities with a common goal of inclusion. The six disabilities are Autism, #CerebralPalsy , #DownSyndrome , #HearingLoss /Deaf, #MuscularDystrophy , #RareDisease featuring Aj. All kids have the Cape-Abilities to be the greatest! Support us, spread the word and become a S.W.A.N kid too.


    I’m new here!

    Hi, my name is Warren. I'm here because

    of my condition of Becker MuscularDystrophy. I want to advocate for myself and all disabled individuals. As a disabled community I find we are miss understood and treated less than. I have had an amazing life but it has been filled with challenges and so many barriers. I have been married 25 years with two adult children now. I have always lived my life to the fullest.

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    Creepy crawlies under your skin??

    For years I had the sensation of bugs crawling under my skin. I'd tell people and they'd say that I'd lost my mind or isn't that something crazy people have?! I tried so many lotions, oatmeal baths, you name it. It always happened at the same time of night. It wasn't every night so it always caught me off guard. The sit straight up out of your sleep off guard. One night it was so bad that I called the suicide hot line at 4 a.m. I just wanted it to stop, be over and I would have done anything for it to stop! The wonderful man I spoke with calmed me down and made me promise to call my primary doctor the next day.

    I got an appointment and told my doctor my experience verbatim. I told him if he couldn't help me he'd likely never see me again. Thank God that I have a wonderful doctor. He said that I have formication and prescribed Doxepin at night. Later this started during the day as well and he prescribed Citalopram.

    Formication is the sensation that bugs are crawling on or under your skin when they don't really exist. Causes include mental health conditions such as depression, medical conditions like Parkinson's disease, certain prescription medications, or drug use. The symptoms mirror many fibromyalgia symptoms.

    I've noticed a few fellow members mention the feeling but never a diagnosis. Help is out there. Let your doctor know. I hope it works out for you too. 😁 #RareDisease #Fibromyalgia #Depression #Neuropathy #edema #formication #EssentialTremors #MyotoniaCongenita #MuscularDystrophy