My Nonprofit Reviews

In July 2008, I was rushed to the Emergency Room thinking that I was having a stroke. My entire right side was numbed and my right leg began to drag. They took CT scans but the emergency doctor could not give us any results. He was waiting for a Neurologist. It turns out I had numerous hemangioblastomas in my cerebellum and spinal cord. I was admitted to the hospital and transferred to Barrow Neurological Institute ICU about 30 miles from the ER. My husband was told I needed an emergency surgery. Days later, when I tried to begin to walk we noticed that I was having issues. This was the scariest event we had ever experienced. My husband started researched Von Hippel Lindau Syndrome and came across the Von Hippel Lindau Family Alliance. The information was in plain English. A month later, I was at home and began to contact them. They enlighten me and brought some peace of mind; and helped me ask the right questions. Unfortunately, I live across the United States in the West Coast, so I do not have VHL Centers in my local area. Needless to say, I had several more surgeries; many were out of state. Joyce Graff is an inspiration which gives me the courage to be a "Powerful Patient". VHLFA website, Inspire Support Group, Powerful Patient Talk Radio, Hotline, newsletters and the VHLFA Handbook (they added a new children Handbook) are powerful resources that I have used. In addition, they have partnered with The National Disease Research Interchange to continue the research to help us find a cure in the future. Together by donating tissue from surgery, we can help find a cure for the next generation.

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