Life with a Myositis Disease

The laughter and tears that come with living with Polymyositis

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Location: fort worth, texas, United States

Tuesday, July 25, 2006

Help!

I am trying to help raise funds for the MDA (you know - Jerry's Kids?). This is truly an amazing organization, and anything, any amount you could offer would be hugely appreciated. Just click on this link: https://www.mdaevent.org/ParticipantInfo.aspx?j=bc5d90fe-be79-40b2-9065-7cffe38b485f All donations are tax deductible!

Why am I such a fan of the MDA?

At the age of 36 I became one of Jerry's Kids. For those who aren't familiar with "My Story", I was diagnosed with an extremely rare autoimmune disease (Dermatomyositis) that rapidly left me unable to walk or sit up unaided, I slurred when I spoke, struggled to swallow....yadda, yadda. Pretty scary for someone who had never had worse than the flu.

I was completely lost. When I went online to research my disease I was contacted by a woman suffering from the same disease and told to call the MDA.

The MDA?

Desperate for any information and lost in a sea of medicalese, I called. I made one call. One. Before I knew it I had been assigned a case manager who set me up with appointments with three different specialists (neurologist, physical therapist and occupational therapist), visited my home to assess my physical needs, called me and met me at my doctors appointments 'just in case'.

Unbelievable. Not once did I have to go through any bureaucratic rigamarole.

They saved my sanity.

Please support the work they do.

1 Comments:

Anonymous Cheri Nelson said...

Hi, I just saw you on Channel 5. I have had Dermatomyositis for 10 years. We have just moved to Texas, we close on our house today! We will be in Melissa. I would love to know who you use for a doctor. I have been in remission for 3 years but need a doctor to keep tabs on everything. I am 27 years old have have never been so happy to hear the word Dermatomyositis as I was a few moments ago when I turned on the news! Please email me! cheri_nelson2002@yahoo.com

Thanks in advance!!!!
Cheri

8:46 AM  

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