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Condition Ward Form

Condition Ward Form

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Instructions and help about condition bexar form

Hi, my name is Will. I have celebrated February  28th my whole life as it is my birthday,   and it is also Rare Disease Day. I was born with  a condition called X-linked Myotubular Myopathy,   or MTM. Myotubular Myopathy affects all of my  muscles. I use a ventilator to help me breathe,   a wheelchair to get around, and assistive  technology like this switch to communicate.   I am proud to have graduated from my local  high school. I have raised awareness for   Rare Disease Day and MTM with presentations in my  biotechnology classes. I also assist my parents   with hosting national conferences for MTM-CNM  family connection. These fun events bring together   patients, medical professionals, and pharma  companies. I love my life and I love being me,   but I do wonder what it might be like if someday  there was a treatment that would help my strength.   If I could move my hands better, I  could use a computer more quickly,   as I have a lot to say. If I coul

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