October 14, 2013
I was diagnosed with amyloidosis over ten years ago before this organization had been founded. Slowly and steadily a handful of others affected by this rare disease came together under the dynamic leadership of a petite lady who had been caregiver to her beloved "Unc" and wanted to do something positive in his memory and take this disease on. Our numbers grew exponentially all over the country, offering information, support and awareness to patients as well as to the medical community. The online support network is amazing. Any question I have can be answered by someone who has experienced the same thing or by a medical advisor. Everyone is so supportive. What was once deemed a death sentence has become a very treatable disease when diagnosed early. This organization has saved countless lives by directing people to the right doctors and centers of excellence for appropriate intervention. Before Amyloidosis Support Groups was formed many people died from misdiagnosis and too late or dangerous therapies administered by poorly informed practiioners.
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MY ROLE:Client Served