Press > Patient Testimonials

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  Just writing my story was so therapeutic. I had felt so alone and it felt so good to hear from other AVMers. It also makes me feel better when I can help others.

  Connie T (NY)
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  Living with a facial AVM for my entire life I had never been able to find a sense of community and understanding until AVMSurvivors.org. The opportunity to network, share information, ask questions, and provide answers was exactly what I had been missing and so desperately wanted. I've seen first hand the true benefit of a support site like this. AVMSN has become a part of my everyday.

  Shalon W (CA)
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  I was diagnosed with TN in October 2008 and have been a member of LivingWithTN.org since November 2008. I consider myself fortunate that the site was set up shortly after my diagnosis. I had searched on-line beforehand and most of the pages I read mentioned "suicide disease" which was pretty depressing to say the least. From the moment I joined here I didn't feel so alone and isolated. It was very comforting. I consider the members here part of my family and I have made friendships I know will last a lifetime.

  Jo (UK)
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  I wanted to share with you my experience since participating in the CIDP community. Before joining I knew of no significant treatment alternatives other than the IVIG treatment that I have been getting for years. Shortly after joining the group, I learned of a treatment that could shut down the autoimmune response associated with my CIDP. I then spoke to people at Northwestern University that are overseeing this treatment research project. They report a 60-70% success rate. I was also able to make phone contact with one of our group members that went thru the procedure. She is thrilled with her results. I then spoke to my doctor about it and he pointed out a less aggressive option that could also shut down my disease-related autoimmune response. Bottom line: Before Ben’s Friends – 0 options After Ben’s Friends – 2 options For me, having two options that could shut down the disease is an extraordinary outcome. I attribute 100% of this outcome to Ben’s Friends.

  W. B.