Question: I’m from Canada and I have VHL. My teens will be tested for VHL next Monday. I have debated over this for some years and still I ’m confused.

If they test positive for this gene, what about life insurance? What about employment? In a way I feel that they should know, but in another way I feel like I am robbing them of future employment by exposing this illness. How do you guys deal with this? Maybe I should just have their screening done and take it from there. Once the results are out, I don’t know how this will affect their future. How have other children fared with these test results? Have they been discriminated against in employment or denied life insurance? Should I or shouldn’t I? -- Diane F., Ontario, Canada

Response #1: We had our boys tested 4 years ago this fall when they were almost 12 and 8. We chose to purchase life insurance for both of them before they were tested. We chose a policy where they have options in their 20’s and 30’s to add to the policy if they want with no health quesitons asked. We just wanted to make certain that when they are grown and have families of their own, they would have the option of having life insurance.

My husband’s health insurance has never even asked one question concerning the boys’ diagnosis. They have numerous tests yearly as well as procedures (our oldest has had 5 laser eye surgeries this year) and they just pay the 80% and never ask why they are having these screening tests.

For me, knowing is much better than what-ifs. We waited almost 4 years after my husband was diagnosed before testing the boys, and I can tell you.....the not knowing was much more torturous than the knowing. I am just relieved to know, so I can take the best care of the boys.

When you say you feel like you are “robbing them of their future employment by exposing this illness”....think of the harm you could do them by NOT knowing about VHL. If they have an undiagnosed pheo or kidney cancer or spinal cord tumor, they could wind up with diability or worse.

Without a diagnosis, I dare say some doctors may not take their screenings as seriously. And why burden your children with screenings if they are not really necessary?

My husband has had 30 tumors since 1998 and he never had a single symptom. The only way we found out was because he became ill with a brain tumor, which led to a diagnosis of VHL. Based on that diagnosis, they began the screening that found the kidney tumors. That is how we found out about VHL. That is scary. I never want my kids to think just because they “feel good” they do not have to have their checkups. VHL can manifest without you feeling symptomatic.

I hope this helps. I just know from experience that not knowing was killing me inside and I did not even realize it until we had the DNA test done. Knowing was hard at first, but then you feel almost a sense of relief of knowing so you can take the very best care of them. You know what’s happening, and can take charge.

Good luck and keep us posted. -- Robin K., Texas

Response #2: Just thought I would add my two cents, as a fellow Canadian. I had my two kids tested when they were still babies. It didn’t even occur to me not to. One, N., is positive, the other, M., is negative. N. had a pheo removed when he was six years old, and I wonder if we would have found it right away if we hadn’t known he had VHL. It is too easy to let denial kick in and explain symptoms away as normal, or as minor illness. And I do think the doctors take everything a little more seriously when you have a diagnosis in your hand. In the case of M., I am so glad that we know he is negative. Now he can go about his life without the hassle of screenings. And what a huge relief for me to get that good news.

I think this is a personal decision, but for me I have yet to regret having them tested and I have had many occasions to be grateful for knowing.

As for the insurance question, I am covered under my work group insurance. So I have full benefits and life insurance too. You could consider getting life insurance for your children now, before they are tested (you could even cancel it for any that aren’t positive once you get the results, if it is too expensive to maintain). And, living in Canada, we don’t have to worry about medical insurance. That is all covered, thank goodness!

Good luck with your decision. I hope it all works out for the best. -- Renée, Ontario, Canada

As printed in the VHL Family Forum 14:1, April/May 2006. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.