Myotonic Dystrophy


Myotonic Muscular Dystrophy (MMD) is an inherited disease. It is autosomal dominant, meaning that if a person has the illness, either her mother or father must have also been afflicted. In addition to causing a very specific pattern of weakness (lower legs, hands, diaphragm, neck and face) it is multi-systemic, often leading to cataracts, heart arrythmias, swallowing and digestive problems and, sometimes, cognitive or personality issues. Approximately one person in 10,000 will have MMD. The Muscular Dystrophy Association sponsors research to find treatments and a cure for MMD.

  3 Responses to “Myotonic Dystrophy”

  1. Well hello I’m posting in another spot! I read that there are 2 types of MMD. My quads were affected early also, plus the other muscles and issues. Do you know if you have type 1 or 2? Does it matter? Makes ya wonder, maybe I don’t have IBM or MMD, maybe some other dystrophy! It seems that only time will tell.

  2. I found your blog by Google search of Myotonic Dystrophy mentions – we have formed a support group / research foundation for those affected at . I am sorry for your lose and especially sorry that the multi-symptoms of MMD confounded your doctors. We are trying to raise awareness not that we have viable treatments yet but with better understanding comes hope. I look forward to exploring your blog and would love to correspond more if I can be of help.

  3. I just found your blog. I was looking for something else on myotonic dystrophy. I have type 2 and it really started giving me problems in 2011. Diagnosed in May of 2012.

    I will be reading this blog and all the old posts on the topic. At this point I am trying to figure out how fast this can progress. I was told that type 2 is ‘mild’. I used to think, no problem. So what if I need a cane? I can handle this.

    During the last year I have come to question a lot of what I was told. I anticipate needing a wheelchair in the next two or three years.

    Thanks for sharing both of your experiences.

    My condolences on the passing of Beth.

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