Join now

Already a member? Sign in

Welcome to Inspire!

What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.

Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.

How - Joining Inspire is completely free and usually takes less than a minute. Join now!

corner corner corner

Suspected of having VHL

kbien
1 Recommendation

I was recently diagnosed with RCC. I will have a partial nephrectomy next Friday. During the past couple of weeks I have discovered that my grandmother and great-grandmother both had kidneys removed. Then I remembered that my mother had a benign brainstem tumor about 12 years ago.

This morning my doctor told me that after the removes the tumor he will send a portion of it to be gene tested. He is specifically looking for VHL. I'll know i a couple of weeks.

I know absolutely nothing about VHL. Any input would be greatly appreciated.

6 replies

IDONTUNDERSTAND

I don't even know where to start or if I am even in the right place but this is my story. I was engaged to my sons father and when I found out I was pregnant he left, not wanting anything to do with a child. My son is now 7 and we recently got a not in the mail saying that his father has VHL and that my son needs to be tested. I am meeting tomorrow with the genetic specialist, and counsellor but I am in panic mode. I guess mostly because even though I have read alot about VHL, I don't really understand it. The only thing I do know for sure is that there is a 50/50 chance that my son has it. I guess in part I am in denial thinking there is no way my son has it but I know there is a real possibility that he does, can someone tell me what testing they do on children and also what should I expect for the future if my son does have it. Sorry.. I am just so new to this and I am confused,suprised,worried along with many other feelings, any insight would be appreciated.

CincinnatiMom

The only testing they'll do is take a blood sample to be anaylzed for the VHL gene mutation. They might go over some of the details of VHL, and signs/affects it may have if your son is positive.

Good luck - Cindy

TinaDiane

You are definately in the right spot for support about VHL! So sorry for your worries. All the information on VHL can be overwhelming. It is best to slow down and take a few deep breaths. My Dad always told me not to worry about something that has not happened yet. All we can do is prepare for the future the best we can. I have VHL and did not know I had VHL until I was 49 years old. I also have some other not so great genes that have caused me trouble too. My one wish was that I would have known about it from the beginning. If your baby has VHL, it is best to know, believe me. VHL is a disease that we can take control of by careful monitoring. Most of us live very normal lives. Congratulations on your baby!!! The VHL Family Alliance can help you with information. For the best health of your baby, take good care of yourself and think happy thoughts..... Life is good!!!
xoxo
Tina

gill-05

to kbein am in hospital just now having had a open partial nephrectomy ten days ago doing good hoping to be home soon .Ur in the right place if u want to learn about vhl i been diagnoised for ten years now and have several family members who also have it .We are always learning new things and this a great place to start.hope all goes well with your op and mind let us all know how u doing .
Best wishes
gill-05

joyceg98

Do go for genetic testing and find out whether or not you need to worry. Yes, your child has one chance in two of having VHL. He also has one chance in two of NOT having VHL. So while we know it's a nervous time, try to take it one step at a time.

Know this -- if your son does have VHL, please come back and talk more with us. We are here to help you and him to keep him healthy his whole life. That's what we are about here. No one can predict the future. But together we are doing the best we can and helping each other through this experience.

Please let us know how it goes.

I should tell you too that we have a wonderful book now for children that is designed to help you and your child understand what is going on and learn how to manage his health. It's perfect for a 7-year-old. Buy it now at Amazon!

http://www.amazon.com/VHL-Handbook-Kids-handbook-Hippel-Lindau/dp/192953902 9/ref=sr_1_3?ie=UTF8&s=books&qid=1243392516&sr=1-3

Paid-up Members of VHLFA can get it for half the retail price through VHLFA.
http://www.vhl.org/vhlsales/books.php

Best wishes,
Joyce

joyceg98

By the way, the book is supposed to be available in UK and Europe for a reasonable price, printed and shipped from England. I would appreciate it if someone would test that and let me know if it's working well. Go to the Amazon outlet in your geography and search for "VHL" -- the book should be in that short list of titles.

The adult Handbook went to the publisher today. If all goes well, it should be in Amazon as well by mid-June.

Thank you!
Joyce

Add to the discussion

Don't have an Inspire account? Join now!

Forgot password?

Group leaders

You