Patients > 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.
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  We met back in 2006,in Austin at St.Davids. We were new to the AVM issue with my daughter Brittany,then 16years old...Your website then was my biggest support and we had grown to know so many others( and as yourself) struggling through very similar issues as AVM....Today Brittany is 21,married almost a year ago, to a then "Marine".They live here in Austin,though she was gone for a year in San Diego. After her gamma knife we had to wait the long two years....I am so proud of YOU!!! You are such a wonderful example of turning the hurts and pains of this life into positive! May you be ever so BLESSED!!!

  Pat (Austin,TX)