The Milwaukee Post published an article over the weekend on Myositis, my journey and campaign to raise awareness. So far, the best outcome of that was a phone call I received yesterday. I got a call at work from someone who read the article. He was diagnosed with Inclusive Body Myositis (IBM) back in 1990. At that time, he had to travel to the Mayo Clinic in Rochester, MN to undergo tests and receive his diagnosis. The doctor told him there was no treatment, and no cure. This would be something he would learn to live with and he would die with. I was pleased to share with him that research is being done, not enough, but certainly more than was in 1990. I told him about the Myositis Center at Johns Hopkins and the TMA website. All resources to give him more insight, information, support and even hope for a cure and/or effective treatment.
I am very glad he saw the article and reached out to talk with me. I hope others will as well.
Over the next week or so I will be working through the numbers to provide a final number on my fund raising efforts.
Again, please accept my thanks and appreciation for your continued thoughts and prayers.
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1 comment:
Hi Kris,
I don't usually read The Post and while glancing at the picture of the "Bronz Fonz", I saw the article next to it and then the word "dermatomyositis" - the disease I had been diagnosed with 6 years ago and am currently battling a bad flare-up. I immediately had to check out your blog and saw that you and I are the same age. Having a rare condition, I have say it was a blessing to see I'm not alone and I would like to talk to you and maybe compare notes. I wasn't sure if it would be rude to look up your phone number and give you a call or if you'd like to send me an email that would be great too. My email address is: PamIam411@msn.com
Your attitude is great and I like your quotes. I hope we can talk soon!
Pam
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