In November 1991, at the age of 18, I was diagnosed with von Hippel-Lindau. I was the fourth of six children in my family to be diagnosed. I have two hemangioblastomas 2-3 cm in size on my right cerebellum. Unlike my other brothers and sister I do not have pheochromocytoma, but since they do, it may appear at any time. I was assured that my case was not severe and that no precautions need be taken aside from annual magnetic resonance imagery (MRI).

In the summer of 1992 my oldest sister went in for surgery to remove one of two hemangioblastomas of her cerebellum. It was at that time that I began to realize the seriousness of my disease. Aside from my sister’s pheo, our cases are similar in the position of our hemangioblastomas. I began to realize that what was happening to my sister could happen to me.

While my case is the least serious in my family, it is still hard to cope with. I face many hard tasks ahead. One day I hope to have a family. How does one explain all this to a prospective mate? There are so many ways this can affect a person.

Having VHL means having a 50/50 chance of passing it on to your children. How would someone feel about this inherited disorder and the gene their child may get? How does one cope with not knowing how long their partner might live? It is a risk one has to take, and not everyone will.

Hopefully in the near future gene replacement will play a significant role in the curing of VHL. Until then, determination, knowledge, and support will have to do.

— Siobhan G., Michigan

[Editor's note: Siobhan, pronounced "Shavanne," is Gaelic for Joan.]

Dear Siobhan,

The truth is, none of us knows how long our partners may live. People get in automobile accidents every day. 11% of women will get breast cancer. Most families in the general population will have at least one major health hurdle to deal with. Nobody has a guarantee on a trouble-free tomorrow, no matter how perfect they may think their genes are.

Yes, you may have some difficult periods to go through with your VHL. You may also have some difficult periods caused by a whole long list of other things that can happen in life, but you have some warning about VHL.

If you know there’s a hurricane coming tomorrow, you have a chance to buy batteries, tape windows, and stay out of the water. If you don’t know, and you go fishing, you could be in for some hard times. We wish the hurricane were not coming, but the warning gives us a better chance of weathering the storm.

When you find that special person to share your love and make a life together, you will work it out with him. The fact that you have determination, knowledge, and support is already a very great deal.

Love, Joyce G., Massachusetts

Applying to College

Dear Family,

My daughter just recently found out she has VHL, and she's very depressed. She is applying to college this year, and I'm terrified that she will be turned down. I don't know if she can deal with the disappointment. Should I check first with the college to see if they will admit a person with VHL?

Signed, Worried

Dear Worried:

I'm 21 years old and in college. I have VHL in the retina and spine, and had two cerebellar lesions removed at age 13.

I think you should not approach the college with this question. Why bring it up? It's not an academic problem, it's just a disease. Don't make a big deal out of it and act normal. Sure, she might need some time off. Lots of kids take time off during college, for reasons of health, mental health, or just to explore the world and grow up. Lots of perfectly healthy kids have skiing accidents and wind up in traction for a semester.

I also think you shouldn't be saying anything to colleges on your daughter's behalf. It's up to her to do it -- to get into college or not. Getting turned down by some of the schools you apply to is part of the game, part of learning about life.

If your daughter is depressed, it would be good for her to have a counselor to talk with for a while. Even just a few visits with a counselor who deals with the stresses of chronic illness can help to get her back on track. It's scary finding out, especially if you know an older relative with serious problems.

I have to take charge of my own life. There shouldn't be anything I can't do, I just have to use common sense.

Best wishes, Chad E., Minnesota

as published in June 1993, VHLFF 1:2