On November 13, 2010 I attended another amyloidosis support group meeting. Mom was at a UT football game in Austin so she did not attend. I think people were starting to wonder if she really existed since she had never been to a meeting.
There were 22 people in attendance including the medical guest, Dr. Z from Karmanos in Detroit. There were 9 patients at this meeting, including two that were in the process of being diagnosed and one person with familial amyloidosis who was initially misdiagnosed and started on a regimen of chemotherapy.
What stands out the most for me regarding this meeting was finally getting to meet Muriel Finkel, the President of the Amyloidosis Support Groups (http://www.amyloidosissupport.com/). She is very active in the online support groups, and there is no doubt as to who is in charge when Muriel attends a local meeting. She is extremely passionate about people having the right information and getting the medical care they need, having cared for an uncle who lost his life to amyloidosis years ago. What began with a single support group meeting in Dallas in 2004 has now expanded to at least 15 support groups across the US that meet regularly. Muriel does a fantastic job keeping it all together and running smoothly, while simultaneously operating her own business, Finkel Supply, in the Chicago area. If you have any type of amyloidosis and can make it to a support group meeting, I highly recommend it.
Now, about my genetic testing . . .