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thebrattx

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1 reviews

Review for VHL Alliance, Boston, MA, USA

Rating: 5 stars  

I am eternally grateful to Joyce Graff and the VHLFA. Without them my family and I would be totally lost. I was diagnosed with VHL in December of 1993. We were told this was a rare hereditary disease that was not commonly known by most doctors. I was being scheduled for surgery to remove a tumor that was at the base of my brain. Shortly after being diagnosed, my husband and I was watching a news show about a woman my age with this rare disease. To our surprise, it was VHL! My husband wrote the show and we were given the contact information for the VHLFA. I believe the alliance had just recently formed and we could not believe the timing of my diagnosis and the show. Over the last 18 years I have undergone over a dozen surgeries removing tumors from my body due to VHL. The VHLFA was a great source of information and supprt for myself and my family. I have used the 800 number numorous times over the years and we have attended several meetings organized through the VHLFA and medical professionals. I have been given the opportunity to talk to and meet people who live with the same condition and their families....I would never wish this disease on anyone else, but it helps to know you are not alone. Ironically through the years I have crossed paths with several people who either have VHL or knew someone with the disease. I felt confident in directing them to the VHLFA to help them deal with this disease. I have also had the pleasure of meeting with Joyce Graff several times over the years. She is a remarkle woman!!!

I've personally experienced the results of this organization in...

being able to help me and my family have a better understanding about this rare disease and given the guidance we needed to monitor and have a better quailty of life living with such a disease.

If I had to make changes to this organization, I would...

none needed. they are awesome!

Role:  Client Served & I received information and support to help me deal with a rare disease.