• In a world made for the able-bodied and that encourages a particular beauty standard, it can seem radical to love your disabled body. 
     
    Hawken reminded me that we are much more than looks and a progressing disease. As he says in his new column, “We have to constantly remind ourselves what makes us lovable humans. For me, it’s making other peop…[Read more]

  • Koulik Adhya changed their profile picture 1 day, 22 hours ago

  • Koulik Adhya became a registered member 1 day, 22 hours ago

  • Russ became a registered member 1 day, 22 hours ago

  • Yes, sometimes the most worthwhile activities and experiences do take it out of us but that’s what makes life worth living!

  • Hi Robin. I know what it’s like to finally get diagnosed and all of a sudden connect the dots to earlier signs of the disease that you may have dismissed. I am happy for you that you now have a diagnosis and at least have an answer to and label to your symptoms. Hopefully, the forums will provide you with helpful ways of dealing with all that y…[Read more]

  • Hey Karl! Thank you for joining our forums and sharing your story. It’s sounds like you’ve had a very full life and have a wonderful family that can be your support system. I too was a “floppy baby” when I was born and needed physical therapy at an early age to build muscle. I was then diagnosed with Mitochondrial Myopathy when I was 9.

  • Are they the elastic shoes laces where you can just slip your foot inside? Because I’ve thought about getting those. They would make life so much easier.

    One recent thing I’ve added to my wardrobe recently are the Klassy Network padded bra tops. They’re absolutely amazing, stylish and comfortable. I can sleep in them and go to doctors appoi…[Read more]

  • Rick, I’ve never heard of using Botox to treat the sphincter but that’s absolutely genius! What an amazing suggestion by that neurologist. I love doctors that truly are problem solvers. You must be so happy to have that problem solved and be able to have that quality of life back.

  • Mayada became a registered member 2 days, 22 hours ago

    • Hi there Mayada and welcome! My name is Leah and I moderate the forums alongside Dani. I have a rare form of MD called Mitochondrial Myopathy that I was diagnosed with at the age of 9.

      Here at the MD Forums, we are like a support group-sharing experiences, giving advice and discussing life with MD in our many forum topics. This a safe and…

      [Read more]

  • Karl Evans posted an update 6 days, 22 hours ago

    A Question: Is there any special clinic or caregiver in the western USA, especially Oregon-Washington who can help me with my LGMDr23? It seems to be not very common, but I have a bunch of variants listed in my genome. Leah, I guess looking in Hawaii should be included, but a trip to Maui might not do much but give me a pleasant Vacation???? oldkarl

  • John Ilisco became a registered member 1 week, 1 day ago

    • Welcome, John! My name is Dani Liptak. I am a moderator on the forums, along with Leah! I was diagnosed with a type of MD called facioscapulohumeral dystrophy at 12. Please feel free to respond to any open discussions we currently have! Also, let me know if there is a topic that you would like to discuss or any general questions about the forums.…[Read more]

    • Hi there John and welcome! My name is Leah and I moderate the forums alongside Dani. I have a rare form of MD called Mitochondrial Myopathy that I was diagnosed with at the age of 9.

      Here at the MD Forums, we are like a support group-sharing experiences, giving advice and discussing life with MD in our many forum topics. This a safe and…

      [Read more]

  • Hi Robin. I have had very similar issues for about 5 years. Going to several different ENT’s and speech therapists never helped at all. I found my solution after visiting a MD conference in Miami a few years ago and the neurologist suggested I visit Dr Chheda, MD at the Univ of Florida, Gainesville. He took one look at my throat through a camera…[Read more]

  • I used to buy shoes without thinking about whether they had laces. I laughed at the shoes with velcro, but now that Vans Shoes has made a pair, I am interested in getting some. But what about all my shoes with laces? I found a U-Lace company and purchased three different colors to replace my shoelaces with them. I will include a picture of my most…[Read more]

  • Kanhaiya became a registered member 1 week, 3 days ago

    • Welcome, Kanhaiya! My name is Dani Liptak. I am a moderator on the forums, along with Leah! I was diagnosed with a type of MD called facioscapulohumeral dystrophy at 12. Please feel free to respond to any open discussions we currently have! Also, let me know if there is a topic that you would like to discuss or any general questions about the…[Read more]

    • Hi there Kanhaiya and welcome! My name is Leah and I moderate the forums alongside Dani. I have a rare form of MD called Mitochondrial Myopathy that I was diagnosed with at the age of 9.

      Here at the MD Forums, we are like a support group-sharing experiences, giving advice and discussing life with MD in our many forum topics. This a safe…

      [Read more]

  • Rick Bethem became a registered member 1 week, 3 days ago

    • Welcome, Rick! My name is Dani Liptak. I am a moderator on the forums, along with Leah! I was diagnosed with a type of MD called facioscapulohumeral dystrophy at 12. Please feel free to respond to any open discussions we currently have! Also, let me know if there is a topic that you would like to discuss or any general questions about the forums.…[Read more]

    • Hi there Rick and welcome! My name is Leah and I moderate the forums alongside Dani. I have a rare form of MD called Mitochondrial Myopathy that I was diagnosed with at the age of 9.

      Here at the MD Forums, we are like a support group-sharing experiences, giving advice and discussing life with MD in our many forum topics. This a safe and…

      [Read more]

  • Clay Willis became a registered member 1 week, 3 days ago

    • Welcome, Clay! My name is Dani Liptak. I am a moderator on the forums, along with Leah! I was diagnosed with a type of MD called facioscapulohumeral dystrophy at 12. Please feel free to respond to any open discussions we currently have! Also, let me know if there is a topic that you would like to discuss or any general questions about the forums.…[Read more]

    • Hi there Clay and welcome! My name is Leah and I moderate the forums alongside Dani. I have a rare form of MD called Mitochondrial Myopathy that I was diagnosed with at the age of 9.

      Here at the MD Forums, we are like a support group-sharing experiences, giving advice and discussing life with MD in our many forum topics. This a safe and…

      [Read more]

  • Karl Evans replied to the topic New Members! in the forum Using our forums 1 week, 5 days ago

    Hi, friends.  At birth, my doctor noted that I was a “Floppy Baby”.  Years later, he told me he also mentioned that I probably would not live to see my third birthday. He did not know why, only that I had some kind of “muscle or nerve problem”.  Last month I passed my 82nd birthday, with 4 children, 10 grandchildren and 19 great grandsons, in…[Read more]

  • Sandra became a registered member 1 week, 6 days ago

    • Welcome, Sandra! My name is Dani Liptak. I am a moderator on the forums, along with Leah! I was diagnosed with a type of MD called facioscapulohumeral dystrophy at 12. Please feel free to respond to any open discussions we currently have! Also, let me know if there is a topic that you would like to discuss or any general questions about the…[Read more]

    • Hi there Sandra and welcome! My name is Leah and I moderate the forums alongside Dani. I have a rare form of MD called Mitochondrial Myopathy that I was diagnosed with at the age of 9.

      Here at the MD Forums, we are like a support group-sharing experiences, giving advice and discussing life with MD in our many forum topics. This a safe and…

      [Read more]

  • Robin replied to the topic New Members! in the forum Using our forums 2 weeks, 1 day ago

    I was recently diagnosed with oculopharyngeal muscular dystrophy. Although I’ve had some symptoms for years, I never thought they were connected to a disease. I’m struggling a bit to accept this diagnosis and the changes that lay ahead for me. Currently besides the dysphagia and ptosis, my leg muscles are pretty weak.

  • Load More

©2022 KLEO Template a premium and multipurpose theme from Seventh Queen

CONTACT US

We're not around right now. But you can send us an email and we'll get back to you, asap.

Sending

Log in with your credentials

or    

Forgot your details?

Create Account