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  • Rodrigo became a registered member 3 months ago

    • Welcome, Rodrigo! 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, thanks for welcoming me. I am a 44 years old man, Ecuadorian / American, architect, living in Miami Florida. I have LGMD2B. I was practicing Olympic wrestling at the competition level, I represented my province (Pichincha 1993, 1994,1995), I was injured during training at the age of 20, then I couldn’t get over that lesion, doctors gave me steroids to reduce inflammation ( Meticorten ) It destroyed me. I never thought that wrestling was going to take a different perspective in my life, the fight of my life was about to start. I still can walk, with a cane, but with many difficulties, I fall very often, a lot of pain and incredible risk. I am full of fears, every step, every morning, every time a go into the shower, etc.
      Overall, it is said, that being brave does not mean that you cannot be scare. Being brave means that you face things even though you are scared.
      I was a fighter, I am a fighter, and I always going to be a fighter. LGMD2B has taken away from me much more than muscles, but it never gonna take away my faith.
      Dani, I feel so alone in this, that is why I join thi forum.
      thanks
        • Rodrigo, thanks for replying and reaching out. First, you are not alone. You have the members here on this forum, me and Leah, to talk with when you need some company. It is challenging now to want to reach out and talk to people about how we are feeling. I never realized how much I enjoyed going out and feeling freedom until it was taken away because of COVID.
          Before Facebook and other social media, I too felt alone in the world with my FSHD. But thankfully, through technology and organizations specific to our muscular dystrophy, we can connect with thousands of people with the same disease as us. I am part of the FSHD society, and I have met many people with my same MD. I even traveled to Boston and met a lovely young woman with FSHD. As soon as restrictions are lifted, I plan to travel and meet more people with my MD.
          The best thing that has helped me cope with this disease is talking to a licensed therapist. One that specializes in chronic illness and pain. It is important to talk to someone professional who can give us the tools to help fight anxiety and depression. Having faith and hope is also important, but I think talking to a therapist has been the thing that has helped me the most deal with my muscular dystrophy.

      • Hi there Rodrigo and welcome to the MD Forums. Like Dani said, you are not alone and I’m glad you decided to join the forum in order to talk to people going through the same circumstances to get advice and share experiences. It can be scary when your body doesn’t function as it should and has previously but you’re still pushing forward and that’s the most important thing. I’m looking forward to talking to you through our topics.
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