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

Rating: 5 stars  

This group has been invaluable in my journey as well as my father's journey. Unfortunately my father did from Hereditary Amyloidosis 7 years ago, but his constant desire to find answers and the help of many doctors and this organization brought him answers which have in turn helped me. I am a carrier of the gene and was recently diagnosed as having hereditary amyloidosis. I am almost asymptomatic (some autonomic nervous system involvement, peripheral nervous system involvement and GI involvement) however which has made me incredibly lucky, because I was able to qualify for Onpattro and so I am receiving a therapy which will hopefully allow me to continue on with my life indefinitely the way it is. As of now it isn't affecting me very much. I work full time, play with my son and two pug dogs, go camping, go to music festivals...everything to live my best life. We first learned about the organization in 2011 when my dad was diagnosed and we went to the meeting in Chicago that fall. It was helpful and scary because then there wasn't as much hope, and no medications on the horizon. My husband went to the last conference and he couldn't say enough about how well organized it was, how informational, and about how hopeful it is now. Thank you from the bottom of my heart for giving us hope and a community which we once lacked. It makes it so much more doable when you know you aren't alone!

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