Being an unaffected member of a VHL family has been a difficult position at best -- not knowing where or who to turn to as each medical problem arises. For years our family has had to depend on each other's experiences to find knowledgeable, professional medical attention.

Over the past thirty-five years we have had some excellent and, in a few cases, some less than acceptable care. Luckily we have come in contact with several medical professionals who have worked with us in researching VHL and providing excellent care. I have personally known the frustration of dealing with those that won't believe or even pursue the myriad symptoms that can lead to early intervention in the effects of VHL.

I feel that the VHL Family Alliance and its objectives will be a Godsend to us. I look forward to working with the Alliance.

As published in the VHL Family Forum 1:4, December 1993. For permission to reprint, please contact the VHL Family Alliance at editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.

mystory