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Dylan Thompson and
Leah Leilani are now friends 1 month, 2 weeks ago
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Dylan Thompson posted a new activity comment 1 month, 2 weeks ago
Oh ok I see. So like what symptoms do you experience? DMD is inherited from the mother too. When did you start needing a wheelchair on a regular basis?-
Yeah, I actually knew a girl from MDA Camp who was a carrier. So, my body doesn’t make the normal amount of energy, therefore I get weak and tired very easily (like most people with MD). But it also effects the function of all my organs. I get palpitations, have cardiomyopathy, brain fog, troubles digesting, struggle to regulate my t…
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Dylan Thompson changed their profile picture 1 month, 2 weeks ago
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Dylan Thompson posted a new activity comment 1 month, 2 weeks ago
Hello Leah It’s very nice to meet you. I’m happy to be a part of this community too. I was diagnosed with Duchenne Muscular Dystrophy when I was 5. I have been in a wheelchair since I was 10. I’m not actually familiar with Mitochondrial Myopathy. If you don’t mind me asking, what is it exactly?-
I don’t mind you asking at all! So Mitochondrial Myopathy is more of a metabolic disorder rather than neuromuscular even though it can be categorized as a form of MD. It effects my cells and the amount of energy they produce. All of my vital organs are affected and I use a wheelchair to get around. According to diagnostic testing, I…
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Oh ok I see. So like what symptoms do you experience? DMD is inherited from the mother too. When did you start needing a wheelchair on a regular basis?
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Yeah, I actually knew a girl from MDA Camp who was a carrier. So, my body doesn’t make the normal amount of energy, therefore I get weak and tired very easily (like most people with MD). But it also effects the function of all my organs. I get palpitations, have cardiomyopathy, brain fog, troubles digesting, struggle to regulate my t…
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Dylan Thompson became a registered member 1 month, 2 weeks ago
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Hi there Dylan, 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…
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Hello Leah It’s very nice to meet you. I’m happy to be a part of this community too. I was diagnosed with Duchenne Muscular Dystrophy when I was 5. I have been in a wheelchair since I was 10. I’m not actually familiar with Mitochondrial Myopathy. If you don’t mind me asking, what is it exactly?
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I don’t mind you asking at all! So Mitochondrial Myopathy is more of a metabolic disorder rather than neuromuscular even though it can be categorized as a form of MD. It effects my cells and the amount of energy they produce. All of my vital organs are affected and I use a wheelchair to get around. According to diagnostic testing, I…
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Oh ok I see. So like what symptoms do you experience? DMD is inherited from the mother too. When did you start needing a wheelchair on a regular basis?
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Yeah, I actually knew a girl from MDA Camp who was a carrier. So, my body doesn’t make the normal amount of energy, therefore I get weak and tired very easily (like most people with MD). But it also effects the function of all my organs. I get palpitations, have cardiomyopathy, brain fog, troubles digesting, struggle to regulate my t…
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