I am happy to announce that the Mississippi Chapter of the VHL Family Alliance has been formed. After attending a support meeting in June and meeting with Joyce Graff, I knew that I wanted to be a part of the Alliance.

I have 35 years experience with VHL, having eye and brain tumors. I have one daughter affected since age 14, including involvement of the eye, brain, spinal cord, kidneys, and pancreas. The good news is it has not kept her down! Through it all she was determined to finish nursing school, and in December of 1992 she graduated and received her R.N., B.S.N. At age 31 her goal became a reality.

This was a particularly great accomplishment considering that she lost the use of her right arm and hand after her last brain surgery in 1991! She is currently working in the psychiatric division of our local hospital, with no major work limitations. She is a special woman who brings to nursing a very special empathy.

I have two sisters and one brother who are affected, and one unaffected sister. I also have two nephews that are affected. Over the years we have depended on each other for support and strength. We know the positive uplift of that support.

Four years ago through a local doctor in our small town I was given a name of a woman with VHL who wanted to meet me. Her father and several members of her family had been diagnosed with VHL. It was remarkable to meet someone else with similar problems. It has also taught me how valuable support groups like this can be. You no longer have to feel alone with a syndrome that only your family has experienced.

Through the Family Alliance we can communicate and support each other. I look forward to being associated with the Alliance and adding my support in any way I can.

As published in the VHL Family Forum 1:3, September 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.