Several years ago I moved to Atlanta and as part of my initial few months here, I picked a new PCP from an index of several doctors in the area (picture me closing my eyes and pointing at a page in the book) and had my first full body physical in several years. Amazingly, the physician (Robert Marcus of Piedmont Physicians on Roswell Road) found a couple of anomalies during this physical and had me scheduled to see some specialists. A few days later I received a call from him saying that, after putting 2+2 together, that the various things he found may be related to a pretty rare genetic disease call Von Hippel-Lindau?? What?? What is VHL??? I immediately went on the Dell PC that was running Windows 98 and found out all I could about VHL, and immediately wished I had not!! Things did not look good!!
 

After several imaging tests and a couple visits to specialists, it was determined that I was one of the interesting genetic mutations and I did have VHL.....duh duh duh. A surgery for the removal of a testicular tumor started my surgical journey. It turned out that the tumor that was removed was non cancerous, but the surgeries were certainly not over. So far, 3 brain surgeries to remove various hemangioblastomas, 2 kidney surgeries that involved embolization as well as radio frequency ablation of my renal cell carcinoma tumors, and more retina surgeries that you can shake a stick at.....

I am very blessed to have only had those surgeries so far and to have lived as peacefully as I have with this disease. I won't have children since this is an autosomal dominant disease and I do not want to pass it on, and I have regular scans of my abdomen every 6 months and of my brain every year; but other than that, things have been fairly normal for me. I know there will probably be more surgeries to follow and I will take them as they come.

When I was diagnosed in 1998, there was no talk of limiting the growth of tumors, but with the FDA approval of Welireg in December of 2023 for adults with VHL, there is now a new hope for all of us.