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  • Sara became a registered member 6 months, 2 weeks ago

    • Hi there Sarah and welcome to the Muscular Dystrophy Forums. Dani and I are happy to have you as a part of this community.

      Before I tell you about the forum, I would like to introduce myself. My name is Leah Leilani and I am a co-moderator for the forums alongside Dani Liptak. I was born with a rare form of Muscular Dystrophy called Mitochondrial Myopathy and wasn’t diagnosed until the age of 9.

      Here at the MD Forums, we are like a support group, sharing experiences, giving advice and generally discussing life with MD. Don’t hesitate to join in on any of our many forum topics. This a safe and judgment free zone. If you have any questions, want Dani and I to cover a specific topic or have any critiques on how we can improve the forums please let us know by private messaging either one of us on our profiles.

      Wishing you a lovely day,
      ~Leah

      • Welcome, Sara! 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 Leah, Dani – thanks for the warm welcomes. I have FSH dystrophy like Dani, but I actually don’t remember being formally diagnosed; I know it’s in my medical records, but it runs in my family and my grandmother, my mom, and two of my aunts all have/had the condition, so there wasn’t really a need for formal diagnosis to understand what was going on. I don’t have any specific questions, but I’ve been getting emails from MD News for a long time, and I figured it was about time I joined.

          The thing I’m most interested in is hearing about clinical trials for FSH – I’ve seen them come up here and there, but even though I have reached out by phone and email to the people listed as contacts when I do find studies that are going to be starting, I never hear back about participating. I’d like to know if anyone has found strategies that help them to get responses. Thanks again – I look forward to hearing from you both and others in the forum.

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