My Life

As I look back over my life which began over 78 years ago, it's been a long pleasant trip with some detours.

Before I go into the VHL part of my life I'd like to reflect on an incident that occurred in New York City about 1935, when I was 10 or 11 years old.

My friend and I were about to cross a street, but noticed an automobile approaching in the distance. Anyone with any sense would not cross the road in front of an auto, no matter how far away it was. A gentleman came and stood waiting with us. As the auto approached we saw a beautiful black shiny automobile with a pure white convertible top, pulled down. There was a driver and one passenger. The passenger noticed us and was waving as hard as he could. The gentleman asked if we knew who that was. I answered, "No." He said, "That is your president, Franklin Delano Roosevelt." Frankly, I was more impressed with the auto than the President.

The word car did not exist at that time. As I think back the President and driver had no escorts. There were no police or Secret Service. The President seemed quite happy to see us. How things have changed!

I was brought up in an era when we did not take medicine. We never even had an aspirin in our home. To this day I do not take medicine. There were other weapons to take care of problems that came up -- natural products. Headaches were helped by putting ice on our head and heat at our feet. Believe it or not, it works! The term von Hippel-Lindau wasn't introduced into my life until June of 1985, when I was 61 years old. I visited an excellent ophthalmologist by the name of Gordon Schwenk in Ocala, Florida. He discovered a hemangioma in my right eye. He treated it, successfully, with laser. More than that, he saved my life.

He asked about my family history and concluded I had von Hippel-Lindau syndrome. I had never heard of this medical condition up to that point. He suggested I go to the best place I could find and he explained the parts of my body that could be affected.

Fortunately I did as he suggested. I went to Boston where I was diagnosed as having renal cell carcinoma on the right side and a pheo on the left side. The surgery was performed successfully by Dr. Libertino. The scar is barely visible and I've had no problems in that area since.

This syndrome is such an insidious disease. How could this happen? Where did it come from?

As I looked back to my visit with Dr. Schwenk it was obvious he knew I had VHL. But I soon came to realize that my son did also.

Ed had one pheo surgery at the age of 17 in 1960, successfully removing the tumor and his adrenal gland. Then surgery on the opposite side of his body at the age of 20. This time the surgeon managed to save a piece of the second adrenal gland, so it was never necessary for my son to take hormone replacement medication.

Much later in my son's life he developed kidney cancer in both kidneys. Surgery was successful, but the cancer metastacized. At the age of 53 he passed away in June 1996. How lucky I am to have had such a son! He had so many kind attributes and was loved by so many, because he cared. What a pleasure it was to be his mother. He and his wife, Linda, managed to raise two wonderful, successful children. Neither of the children has VHL.

Now we know we have a cunning, insidious congenital problem. Where did it come from? My mother was from Germany and was one of five children in her family. Four of them died between the ages of 7 and 28. Yet my mother survived to the age of 80 with no apparent problems.

She and my father had eight children and we now know four had VHL. Three of them died at early ages and I am the fourth.

On my father's side nearly everyone lived to a ripe old age.

In our family we can trace this disease through four generations. There are others from the family tree who inherited VHL and yet others who have not.

As I think back, I realize I had symptoms at an early age. I had toxemia during one of my pregnancies. In my 20's for a period of time I had intense headaches. At the same time this was happening I thought I had a tumor because my stomach swelled and I didn't feel well. The doctor said nothing was wrong. He felt I was physically and mentally stressed. He was right, I was stressed at the time, but I am now convinced that there was more going on.

Does that mean we could have VHL eruptions when things aren't going well? Are we sometimes victims of our own personalities or of people we allow to annoy us? Who knows.

For the past thirty years I have taken vitamins and I believe they have contributed to a fairly healthy life except for the few VHL episodes that I've experienced. I'm also an advocate of healthy eating, exercise, and drinking lots of water. I distill my water.

As a youngster I was quite active in athletics such as swimming, ice skating, roller skating, and other sports. I did the same things with my kids later in life. Did this help? Maybe. Apparently it didn't hurt. But who knows all the answers.

One thing I do know. It does not pay to dwell on this problem. Forget it. Get checkups, but lighten up, have fun, enjoy life. Travel even if it's to the beach or mountains.

Thanks for listening,

Alva