I have had VHL for approximately 12 years now, although it was not diagnosed until I had a carotid body tumor (see note) removed, back surgery, and discovered angiomas in my eye. It was my eye doctor who diagnosed the possibility of VHL and told me to get my kidneys scanned immediately. At that time I looked up VHL on the internet to discover the VHLFA website and information on what VHL kidney cancer was all about.

You will never know how helpful this website has been!!! At that time, a lot of places were doing renal-sparing surgery, so that was some hope for me. My local urologist diagnosed the kidney cancer and said he didn’t know much about VHL but he thought it was a situation where the tumors would keep recurring so “we might have to take both of your kidneys out and put you straight on dialysis.” Boy, was I glad I found your website!!!

That was eight years ago and I have yet to have any invasive kidney surgery. I was fortunate to be involved with a kidney study through NIH and have had radio-frequency ablation done successfully on three separate kidney tumors over the past four years.

I didn’t think I was the type of person who would ever take time to type a letter to VHLFA but I had to just say thanks to all of the people who keep the website going and the research monies and the many other events to help VHL patients.

Note: a carotid body tumor is an extra-adrenal pheochromocytoma (also called a paraganglioma) near the carotid artery in the neck, below the earlobe.

As printed in the VHL Family Forum 12:4, December 2004. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.

mystory