By Heidi, Von Hippel-Lindau syndrome, United States, March 12, 2019
Von Hippel-Lindau ("VHL") is a rare disease which affects a persons ability to supress tumor growth in certain areas of the body. The research for "VHL" may hold the cure to other types of tumor progression. Knowing about this genetic flaw helps patients with "VHL" stay ahead of the progression of tumors by routine imaging and measures to keep close watch on tumors and treat or remove them before they get too big or spread.
As a person with "VHL" I am empowered by this knowledge and live a fairly normal life. I first had an adrenal tumor when I was in High School. This was before the "VHL" research and knowledge base had even been published. Later in my early 40's I had a fall while waterskiing. This led to imaging via MRI. It was early October 2008 when I learned that I had 3-4 tumors in my head. I had immediate surgery at a local hospital to rule out malignancy. The tissue was sent for analysis and revealed the genetic description which diagnosed me with Von Hippel-Lindau. My case is the first known in my family.
I had 4 surgeries in that year from October 2008 to September 2009. Unfortunately, all the possible manifestations of "VHL" are not yet know. I was one of the first to present with an inner ear tumor of the "VHL" type. However, it took two different brain surgery attempts to address this one! The reason I am telling you this is that every person is unique and rare. When one of us can help the medical community to learn more from our unique manifestation of a rare disease, then my hope is that those patients after us will not have to undergo two of the same surgeries again or play the waiting game. You see, I was told to wait and see if I could live with the supposed "acoustic" tumor. But I pursued a second opinion because I knew in my deepest sole that this was not the answer for me.
There have been more surgeries but I manage to live a pretty normal life in between. One of the valuable gems of advice I want to share with others is that you have the power to live a healthy life by eating colorful produce everyday, exercising and managing stress. I think of my daily routine as training for an athletic event so that when "VHL" tumors need to be addressed I am fit and ready for the "event" and I will recover faster and better! I also believe healthy lifestyle may keep the growth of tumors at bay. Either way, focus your mind on the things you can affect and don't let the negative ideas or worry gobble-up your joy and your ability to make life better for others.
God Bless You, Heidi