Link to Muscular Dystrophy Association

1 Like

MDA needs to update this page, it needs accurate info on symptoms and the Patient Registry. I hope they will update it soon. Here is a link to the MDA Clinical Trials tool, currently there is an OPMD swallow study in Florida and you can sign up here through the MDA’s site.

I agree. OPMD is on the more rare spectrum of MD. I am hopping to revive this section. I also have the disease. I want to bring a voice to the voiceless. I finally got a diagnosis from Baylor when the Mayo just told me I had PTSD. That is a separate issue altogether.

I find the “I don’t know,” from an unskilled Doctor is said, “It’s all in your head.”

I am sure many of you have heard that from doctors before a diagnosis was firmly established. Acceptance from family members out of guilt or denial becomes another hurdle.

My hope is to provide support to those who suffer from this disease.

1 Like