von Hippel-Lindau Syndrome (VHL)

Michael McIntyre is a British comedian, who has a hilarious sketch on people who aren’t parents. Those easy-breezy folks who assume that life won’t change that much after having children. Surely, how hard can it be? His response is “You have no idea.” Chronic illness is like that. You think you know, but you don’t. [...]

Crisp and neat. A rectangle. I never wanted this for a life. Then again, I never thought I’d be a janitor either. But I am a dreamer, after all. And while some dreamers are called the founder of Atari or chief executive of Apple, others are called the janitor. What separates me from those guys [...]

The Facts: Von Hippel-Lindau syndrome (VHL) is a genetic cancer syndrome. A person with VHL has a mutation in a very specific spot on the short arm of the third chromosome in every single cell of his body. This area of the chromosome is called the “VHL gene.” The VHL gene, in its intact form, [...]

Dealing with tumors in tricky places was not something I imagined when I became a mother. When my daughter was 16 months old, there was a large tumor wrapped around her little neck. When she came down with the croup, the tumor caused her to gasp for air. It was a tough situation, but it [...]

Von Hippel-Lindau syndrome (VHL) is a disease caused by a genetic mutation of the VHL gene. The VHL gene is involved in many other forms of cancer; it controls the major feeding pipeline to every tumor cell. The disease causes the development of multiple tumors in a number of sites throughout a patient’s lifetime, from early [...]

I was always a high-strung, fretting, nervous wreck of a worrier. I always found a way to see the bad that could happen in every situation. Murphy was my cousin and I lived by his law. My mother died at the very young age of 27 from a very rare disease called von Hippel-Lindau syndrome (VHL). [...]

My journey with von Hippel-Lindau syndrome (VHL) started in 2012 when I met TJ, and shortly after, we started dating. I was in my final year of university and things were great. Not long after we got together, I noticed a scar on his side which he joked about being a shark bite. He never [...]

My name is Shawn I am a VHL warrior! My journey started long before I was diagnosed with VHL, or von Hippel-Lindau syndrome. My father had VHL and I remember he and my mother traveling to Boston, MA from our rural town in northeastern Pennsylvania for brain surgeries. They would often be gone for a [...]

My name is Manuel and I have von Hippel-Lindau syndrome (VHL). In my case, it’s pretty bad in the brain. No matter how hard I wish for it to stop developing tumors, every time I have a surgery they keep on coming back. So far I already had 15 brain surgeries (and yes, also spinal, [...]