• Tina Pineda became a registered member 2 months ago

    • Welcome, Tina! 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. Enjoy the day, and thank you again for joining the Muscular Dystrophy forum!

      • Hi Dani,
        I was diagnosed with Bethlem Myopathy 11 months ago. It’s good have a forum where we can share our experience.

        • What are you interested in gaining from the forums? Please share any questions or experiences you have; we would love to learn more about you!

          • Hi Dani,
            I am interested in seeing what everyone is experiencing with Bethlem Myopathy or any other form of MD. I’m completely blindsided by the lack of medical professionals that don’t know anything about Muscular Dystrophy and how everyone handles the financial hardships that come with having a disability. What symptoms are people experiencing?. I think gaining knowledge through this forum is what I want to do and also where can I volunteer my time to help.

    • Hi there Tina 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 judgment free zone. If you have any questions, or have any critiques on how we can improve the forums please let either me or Dani know.
      We are excited to have you be a part of the MD Forum community!
      ~Leah

      • Hi Leah,
        It’s great to meet you.
        I was diagnosed with Bethlem Myopathy 11 months ago at the age of 35. My daughter was also diagnosed at the age of 5.
        It’s great to have a judge free forum.
        Thank you,

        • We’re more than happy to have you here with us on the forum. My mom was diagnosed with the same type as me only a few years ago. It isn’t very common for the carrier parent to start showing symptoms as well although it does happen.

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