Ask the Family

Dear Family:

I'm in my mid-fifties. My brother, sister, and dad all died of VHL, but I've never had symptoms. Why would someone like me choose to have DNA testing? Isn't it true that once you're over 50 and have had no symptoms that it is safe to assume you don't have VHL?

-- Signed, Unaffected Sister

Dear Sister,I'm very grateful for DNA testing, and I have come to know that it's important to take advantage of this simple test at any age. If it were not for genetic testing, I would never have been diagnosed with VHL until it would have been too late and a lot of damage would have occurred to my body.Seven of my family members have VHL, 3 have died from it. I was never affected, and I felt fine, so I didn't feel it was necessary to be tested. When I was 52 a visiting English doctor from the Children's Hospital in Los Angeles, suggested that everyone in my family be tested. We jumped at the chance. Surprisingly, my results came back positive! I took the VHL Handbook to my doctor and asked for a VHL check-up. A routine MRI revealed that I had a pheochromocytoma, a tumor in my left adrenal gland, and that I needed immediate surgery.

Following the MRI, I was given a blood test and the 24-hour urine test, both were negative. My blood pressure was low. Three tests all negative, indicating no presenting symptoms of the adrenal tumor. It was "hiding." Had I not had the genetic testing and the MRI, I would not have known of the tumor until symptoms occurred, and then I might have had major problems like heart attack or stroke. I encourage you, and anyone in doubt, to go for the testing. It's worth it!

It saved my life.

God's blessings to you,

Evabeth T., California

As published in the VHL Family Forum  5:4, December 1997. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.

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