June 10, 2010
My brother was diagnosed with VHL 8 years ago. He was losing the feeling in his fingertips and was getting headaches and heard fluid sloshing in his ears. He thought he had a sinus infection. He finally took himself to the hospital emergency room and a Cat scan showed a hemangioblastoma on his brain stem, as well as a build-up of spinal fluid on the brain. He required immediate surgery and a shunt. It was then determined that he had multiple brain, spine, and kidney tumors. His first surgeon thought he had kidney cancer that had spread to his brain. One of the neurology residents suggested VHL. No one else in our family had ever heard of it. We immediately started researching and found the VHL Family Alliance online. They provided us with the education that we so desperately needed. The handbook, the newsletter, the conferences, were all invaluable in our quest for timely information and proper care. We were able to be proactive and inform various doctors about the disease and it's ramifications, as well as the various surgical, radiation, and medication options available. We mailed copies of the VHL newsletter & handbook to every new medical professional involved in my brother's care prior to new appointments. They have all been grateful for the education. The VHL Family Alliance has also been a source of emotional support. They helped us move through the stages of diagnosis shock, surgical and procedural fear, and inability to cope to the ability to empower ourselves through education. It's a great equalizer to be a successful partner in one's treatment rather than a pawn. We will always be grateful to the Alliance for their guidance and suport.
I've personally experienced the results of this organization in...
Access to complete and timely information regarding all of the issues associated with a VHL diagnosis.
How frequently have you been involved with the organization?
About every month
When was your last experience with this nonprofit?
MY ROLE:Client Served & Family support.