I have chosen not to disclose the diagnosis of VHL to my 11 year old daughter until we get the results of her DNA testing. She seems too young to carry such a burden. I have been able to explain my two surgeries to her in an honest way without labeling the cause as VHL. How have other members handled sharing a VHL diagnosis with such a young family member who could also be affected?
-- Patti K., California.

Dear Patti,

I guess my best advice would be simply to leave the door open for her to ask questions, and let her be your guide. Don't give her the impression that she should not ask questions about your operations, but don't tell her more than she wants to know.

It's a little like children's questions about sex. The classic example is the six-year-old who asks where the baby next door came from. The mother blushes and launches into an involved explanation about birds and bees. "OK," says the six-year-old, "but I thought they came from Cleveland."

As long as you leave the door open, the questions will come in small doses, as she is ready for the information. Be honest with her and with yourself. And don't be afraid to open yourself to the loving support of your friends. You will need that support, and you will be giving them the privilege of sharing it with you.

-- Bobbie S., California

Telling a Prospective Mate

Dear Family,

How does one explain all this to a prospective mate? One girl told me that when she gets serious with a boyfriend she has her mother sit down with him and explain about their family tree. I'm terrified that if I do that my boyfriend will head for the hills.
-- Rachael M., Massachusetts

Dear Rachael,

In the winter of 1992 I met a wonderful guy named Leo. We started dating and it began to get quite serious. It was in the springtime that my mother and sister started asking me when I was going to tell Leo about my disease. My initial reaction was that it had slipped my mind. I kept on saying that I would do it tomorrow, but tomorrow came and went. I tried giving hints, examples, and even the "what if" approach. Nothing worked. One day I finally broke down and explained everything.

His reply was even more surprising than I expected, "Well you'll just have to tell me the symptoms that occur so that if your brain tumors grow I'll know when something is wrong, and we'll be able to take care of it together."

Today he knows everything about VHL and is very supportive.

This is something you and your boyfriend have to work out between the two of you. It's not up to your mother to tell him, it's up to you. It's an issue of trust, honesty and committment in your relationship.

I guess my sister was right when she told me that if someone doesn't like you because of a disease, then they weren't worth liking anyway. It's a good thing Leo is worth liking.

-- Siobhan G., 20, Mich.

Telling a Friend

Dear Family,

How do I talk to a person who has trouble dealing with my illness?

-- Lisa W., Michigan

Dear Lisa,

The easiest way to handle a person like this is to sit them down and be honest and open with them. If they ignore the situation, it will not go away. Both of you will be better able to deal with it if it is out in the open and everyone is as comfortable as they can be. Sometimes people can't deal with it -- but at least you will have tried.

All of my female friends had no trouble talking about my illness. On the other hand, some of the guys didn't want to discuss it. One night, not long after I was diagnosed, I went out to eat with some guy friends. Shortly after we ordered, silence fell over the table. You could have heard a pin drop. "Okay," I said. "I know why you're all so quiet. We have to talk about this. Everyone has to be comfortable because it's not going to go away."

Some of them asked me questions about my illness and treatments. We talked awhile and began to relax. Things were better from then on.

-- Brian D., age 22, Alabama, as quoted in Candlelighters, Winter 1993.

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.