While researching my wife found this support groups' site and we went to our first meeting. What a blessing it has been. We were educated, counseled, comforted and advised. The Doctors who are on the front lines battling this disease were there to share everything they knew to help us with our path.
We changed Doctors and got the CORRECT treatment as a result of being there. My wife would absolutely NOT be doing as we'll as she is, if not for this group.
Ways to make it better...
If I had to make changes to this organization, I would...
I wouldn't change anything. I would only suggest increasing the groups influence and ability to educate the medical community so they can better recognize it when they see it.
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