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Humbly Courageous
Hi, I’m Amy. I live life with a condition called Bethlem Myopathy which is a rare form of Muscular Dystrophy. I like to help others by showing how I live well with a debilitating condition. I was born with this disease, so it’s the only way I know life. I continue to work on embracing myself and using that to help others.

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The Long Wait is Over

Welcome back! I hope that you will, by reading my blog, see things through the eyes of someone who is physically disabled, but gets the daily done in a different sort of way! I hope you will find inspiration for you own life, like I get from hearing and learning about others who have a more difficult time physically than I do. I get life changing inspiration from others who courageously share their difficult but beautiful journeys. Others who help educate, while showing that so many things are possible, that may seem impossible.

Recently, I received some life changing news. After many, many years, 44 to be exact, of shuffling through life in the dark, with an unknown disabling condition, I finally got my answer.  After genetic testing of myself and my parents, along with a skin biopsy, it was determined that I have a rare form of Muscular Dystrophy called Bethlem Myopathy.

I'm not sure I could make anyone, who hasn't been through this exact same experience, understand how it felt to hear that news. I felt dizzy, overwhelmed, elated, excited, scared and relieved. I know that probably sounds weird, and you may be thinking, she's excited to have Muscular Dystrophy? In particular a type that is slowly progressive, and will likely continue to get worse? Well, yes and no.

Of course, I'm not excited that I have a condition that currently has no cure, or even any treatment.  A condition that will most likely continue to deteriorate, due to the nature of the disease, coupled with aging. However, I now as I like to say, have found my people! Growing up, I never met anyone just like me. Someone I could tell all of my troubles, struggles and fears of having a disease to that would TRULY understand. I have a very supportive family, and a great group of friends, who are always willing to listen, but through no fault of their own, just don't GET it. I now, thanks to the beauty of social media, am connected with others from all over the world who have this exact same rare disease. People just like me! We truly get each other. We connect, support and share our frustrations and celebrations with one another. At any time of the day, I can jump on and share whatever is on my mind, and the comments will start rolling in. People who have walked these same struggles, and often have suggestions on how to deal with these things. It's truly amazing! 

Along with that, my husband and I are raising money for his Boston Marathon, and have joined with MDA Team Momentum, who raises money to help fund research to find a cure or treatment for those living with Muscular Dystrophy, ALS and related neuromuscular diseases. I am giddy with all the possibilities this diagnosis brings. I love to help others, and it's a dream of mine to help others just beginning their journey with my same disease by sharing my life lessons. The best it yet to come. I'm sure of it!

Comments

  1. I always love your upbeat outlook and am looking forward to Chicago. I'm so glad you've found your people who are just like you too. Keep encouraging others. Here's our MDA link too in case anyone is able to help.
    http://www2.mda.org/site/TR/EnduranceEvent/NationalEnduranceCenter?px=4937298&pg=personal&fr_id=24819

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