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betdzielski

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1 reviews

Review for Amyloidosis Support Group, Inc., Wood Dale, IL, USA

Rating: 4 stars  

On January 18, 2013, my life changed. I suffered a stroke while eating dinner with my husband of 8 months. While at the hospital they questioned him of my family history, he turned to my sister Ellen Cameron for help. Ellen told the doctors that she had Amyloidosis and our mother and sister had passed away So I was immediately tested and confirmed to also having amyloidosis. My sister, probably had Muriel on speed dial during that time. emails were provided to both me and my husband for support groups in our area and we were put on the mailing list for the big meeting in October. We read several of the articles Muriel sent and worked with the team at University of Maryland and had my Liver Transplant October 2014. I wasn't able to attend the last meeting due to my husbands work schedule. But I participate in every study that is brought to me. And will continue to do so. I read all the emails and keep up with the articles and quiz my doctors on any new information. I have met Muriel and she is a one woman dynamo... she makes you feel very special, and she listens... as if she has nothing to do. Muriels department heads or staff are all helpful, supportive, understanding. Eager to hear your story, and comforting.

If I had to make changes to this organization, I would...

My only wish is that they would hold a large meeting for doctors and nurses to learn more about this disease, and what we go through trying to find out if a problem is new or is it Amyloid related.

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