• Pau became a registered member 2 years, 7 months ago

    • Hi there Pau. My name is Leah and I am a moderator here alongside Dani. I have a rare form of Muscular Dystrophy called Mitochondrial Myopathy that I was diagnosed at the age of nine through a muscle biopsy.

      Dani and I are excited to have you as a part of the Muscular Dystrophy forum community and look forward to connecting with you. The MD forum is a safe and secure place to discuss in depth about life with Muscular Dystrophy. Don’t be afraid to participate in any of the forum discussions and share your own experiences. If you have any questions about the forums or would like me and Dani to touch on a certain topic, please let us know.

        • Hi Leah and the others members of the forum community.

          I appreciate your welcome. Thanks.

          I nice to meet you.

          I’m a catalan and I only speak english a little, but I can understand you enough well.

          I am very interested in possible treatments against different muscular dystrophies, because any treatment that can help a type of muscular dystrophy can also help to know better how other dystrophies work.

          And now, these days, I am especially interested in a new treatment against FSH dystrophy with “Losmapimod”.

          I hope to continue talking with you and continue to know each other better.



        • Welcome Pau! My name is Dani Liptak. I am a forum moderator along with Leah! I was diagnosed with a type of MD called facioscapulohumeral dystrophy at the age of 12. Please feel free to respond to any of the open discussions that we currently have in progress! Let me know if there is a topic that you would like to discuss or if you have any questions in general about the forums. Enjoy the day, and thank you again for joining the Muscular Dystrophy forum!

          • Hi Dani,

            I am also a patient with FSHD, like you. With only one important difference I’m very older than you.

            My problems started 12 years old also. But then, there were no genetic diagnoses and specialists speculated with different types of muscular dystrophies. Of course, there wasn’t type of treatment, or anything like that. They only given me a lot of vitamins and lamented my bad luck.

            When I was 30 years old, more or less, I went back to visit other specialists in search of a more precise diagnosis, because my brothers wanted to have children and wanted to know the risks. But it wasn’t until a few years ago that with a genetic test I was diagnosed with facioscapulohumeral dystrophy.

            • You should have a lot of patience with me for the lack of knowledge in the language and how the forums work.

              Thank you.

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