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2014 Twin Cities MDA Muscle Walk

Stella's myositis warriors

Thank you all for helping Jenner raise Money for MDA, I am Jenner's mother and I have a rare autoimmune disease called Inclusion Body Myositis (IBM for short), it falls under one of the many  MDA umbrellas. It is a slowly progressive muscle disease causing weakness in certain limb muscles. They do not know what causes it and as of right now there is no cure. I have had IBM for over 12 years. At first I just had trouble getting up from a chair and going up stairs, which I just took as a sign of getting older.  It took 5 years to get a correct Diagnosis through blood tests, EMGs and nerve conduction velocities and finally a muscle biopsy.  As the disease has progresses I have experienced weakness and shrinking of the muscles affecting my thighs, hips, fingers, wrists, upper arms, diaphragm, esophagus, shoulders, neck and back. My fingers and hands no longer work so I am unable to do routine things I once took for granted such as: typing, buttoning clothes, opening drawers & car doors, lifting pots and pans, pulling up my pants etc.  On a good day I can walk around the house with my walker but it wears me out and I never know when my legs will give out,  so using a motorized wheelchair is much safer. Most people with IBM will be in a wheelchair after a few years, I am lucky that I am just now needing it. IBM also effects your swallowing since it also shrinks your esophagus,  so many of us have trouble eating and choking is a big problem.  I have to have my throat stretched every few months and eventually will most likely need a feeding tube.  One good thing is I have lost weight, lop-got to keep your sense of humor with this disease. I am lucky that I have a good husband who is now my arms and legs, but it is hard not to be able to do the normal everyday things without asking for help. I am grateful for MDA for including IBM. My Doctor's office has a representative from MDA there to help in any way they can.  They help with copays and have a lending closet where you can borrow equipment.  So thank you all for being a part of this by either walking or donating money.

Stella Clapp


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I've raised $400 Personal Gift Jennifer Schubert
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