Story about Von Hippel-Lindau Disease .

Diagnosed and hopefully always waiting

May 16, 2017

By: Nikki


At first my family thought we had pheochromocytoma, but when my cousin died NIH found out we had VHL. I was genetically tested in the fourth or fifth grade and do have the gene. My brother passed away from the disease, my mother has had numerous surgeries for adrenal tumors and angiomas in the eyes. Another cousin has had at least one surgery and her son just finished his second surgery for an adrenal tumor. I have not had my own son tested yet, but I know that having the gene doesn't necessarily mean a lifetime of surgeries or even a shorter life. I have yet to show any symptoms, but that could change any day. I'm always waiting for symptoms to show and hopefully I will spend the rest of my life waiting. 

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