Anonymous community member
„I am certain that founding the association will mean a great deal to all of us."
It all began around my birth in 2000, when my father was also diagnosed with VHL. My grandfather was, as later assumed, the index patient in the family. I was confirmed in 2009. This is a story about inherited VHL across three generations — about constant anxiety and the hope the community brings.
VHL across three generations of our family
It all began around the time of my birth, in October 2000. Both my father and my mother ended up in the hospital — my mother because of childbirth, and my father because of a pheochromocytoma on the adrenal gland.
His father (my grandfather) died young, when my father was only a few years old. The cause was heart failure due to high blood pressure. It was later assumed that he was the index patient in our family.
That was not established until around 2000. At that point VHL was diagnosed in my father, who by then had already had several operations — pheochromocytomas on both adrenal glands, a gamma knife on the brain and spinal cord, and brain surgery.
I was confirmed in 2009 — that I know for certain. From then on came constant visits to doctors, which were hard on a child of nine or ten. By now I have, more or less, come to terms with it.
The journey was not as hard as it could have been — so far only one adrenal operation, laparoscopically. However, the pressure is constant, and so is the anxiety. On the latest MRI, cysts can be seen on the left adrenal gland and on the pancreas.
I would also like to mention that over the past few years there has been a noticeable decline in the ability to schedule examinations and visits to doctors — which, in my view, should not be the case, especially for such a rare and under-researched disease.
I am certain that founding the association will mean a great deal to all of us.