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What do these words mean?

tumblr_nhtunqK0Ow1u60tx6o1_1280When you or a loved one is first faced with a diagnosis of a neuromuscular disorder explanation of the disorder and what it all means is of extreme importance.  Understanding all the terms can be daunting and confusing.  So we’ve gone on the hunt for some words that you may hear and have translated them into simpler, more understandable terms.

Know of any others?  Comment below!


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Seven Things I’ve learned since being diagnosed

Being diagnosed with a disorder is hard. You have this hole in your heart and you know it’s going to be there forever. You can’t go back to how it was before. You can’t even imagine that life anymore. It’s been taken away, along with everything else this disorder carries.
The first signs of muscular dystrophy came when I was 13 years old and I wasn’t diagnosed till my early twenties. What I’ve learned in between have become a handful of lessons. A life full of trial and error, defeat and hope.

  • Don’t hide from the world. When I was first going through the early stages of this progressive disorder, I would just walk through a crowd and hope nobody saw my swollen heart. I hoped they couldn’t hear it screaming silently within me. Going out was stressful. My body was changing and nobody knew it but me. I wanted to ignore it and pretend it wasn’t there, but time proved that impossible. I lost myself for a while. I can’t lie about that. On the outside, I didn’t appear any different; but on the inside I was struggling. But now I want nothing more than to be seen and for my voice to be heard. I’ve learned not to fight with my differences. I’ve learned to make my life as beautiful as possible and to always have an imagination. There is no sense in trying to run or hide from your problems. There is no point in shutting people out. Give yourself life, even with all the weight that you carry. (more…)
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