About Each Other

Anneke and Astrid from Holland talk about living with VHL.

Written by Kracht, Dutch VHL Org. , published over 5 years ago.

About Each Other

Anneke van D. (52) has von Hippel-Lindau  (VHL) disease, an inherited tumor syndrome in which multiple tumors in the body can occur. Her daughter, Astrid (15) recently heard that she does not have the disease.

"When I was thirteen, I lost my left eye. A serious infection, the doctors thought, but now I know that this was the first sign of Von Hippel Lindau. I had never heard of this disease, until in 2003 I was operated on for a brain tumor. When the doctors in the hospital heard about my previous eye surgery, their alarms of recognition started flashing. DNA testing confirmed the suspicion of VHL and more tumors were soon discovered in one of my kidneys and at two spots in my spine.
The moment you get diagnosed VHL, the worry about your own health gets quickly pushed away by your concern for others. If it is hereditary, do my three children have it too? And my brother, sister, cousins? I felt very guilty about possibly having passed it on to my children. What did I burden them with? For a long time I couldn’t get angry with them and was exaggeratedly involved about their well-being. To a certain extent I still feel that way, although I know that my guilt is not jutified.
The day we heard that I had VHL, my husband Willem and I immediately agreed that we had to tell the children. Astrid - then 9 - just listened, but her 16 year old sister immediately understood that this had implications for herself. We did not want to force the children to a DNA test, but wanted them to make a choice themselves when they felt they were ready. A negative result would quite likely to affect their lives. Can you still find a partner? Can you still get a mortgage?
As long as there was uncertainty about their DNA status, the children had to be screened annually for tumors. An MRI scan, for example, can be quite intense and intrusive. Recently, Astrid was able to stop all the screening; she chose to have the DNA test and knows she doesn’t have VHL. Her older brother and sister are not yet ready for a DNA test. A choice that we respect.
If you have von Hippel-Lindau disease, you live with the sword of Damocles hanging over you. Last summer I underwent another brain surgery. Yet it did not really change my life. I still do what I want to do just at a notch lower. That is what we try to convey to our kids: you get nice things in life and less nice things. It is the good with the bad, you have to live with it. "

"I was 9 when my mother’s health became an issue. She hadn’t felt well for a while, but one morning she couldn’t manage to get out of bed. I remember when I called Grandma on my own and I cycled to school all by myself. When I came home that afternoon, Mama was in the hospital. I can not remember how I felt that day. I guess I was too young to understand everything. I spent a lot of time at my friends’ houses during that period, but I liked that part, not at all upsetting. At home, my 16 year old big sister did the things my mother always did. She showered me, gave me dinner, put me to bed.
What hurt me a lot was that some kids teased me, calling me “cancer-kid”. I thought, I’ll give a talk  in my class about VHL, so everyone can understand how difficult it is for our family. However, my parents and the teachers thought the subject was too intense for elementary school children. I am exceedingly thankful to a few close friends and my Scout Club where I could lift my heart and have fun or just be alone if I wanted to. Also I was lucky that my parents knew a few of my teachers. They sometimes called me aside for a chat.
I only understood later what my mother’s illness meant to me. Six months ago I decided I wanted a DNA test. Beforehand you have several discussions with a  psychologist because they want to make sure you are strong enough to deal with with a possible negative outcome. That’s me; I am quite straightforward in dealing with things as they are. When I heard I did not have the disease, took a while before it dawned on me: No more studies, no doubts about the future! Yet I still want to know about von Hippel-Lindau. When I grow up I want to work in the health system, in care; who knows, maybe my knowledge can be put to good use there.

I especially think my mother is very brave, but sometimes quite stressed-out. If I just had a little headache, she would immediatley panick: “Are you okay? Are you being careful?”  Completely understandable and with very sweet intentions. But it's hard sometimes, if I don’t feel great, I often don’t let her know. "

Reference: Kracht 8, KWF Kankerbestrijding, maart 2010

Article courtesy of: Kracht magazine and the Dutch VHL Organization

Written by Kracht, Dutch VHL Org. , published over 5 years ago.

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