For over 30 years I have participated in fund raising for the Jimmy Fund. Those of you who know me and have supported me over the years have heard my reasons for walking starting with my father passing due to cancer when I was 6 years old. Each year I have dedicated my efforts to a family member or friend afflicted with cancer at that time. Some have beaten the cancer, but too many have lost their battle and their fight must continue.
I believed last year would be my last year to participate in the Jimmy Fund Walk and ask family and friends for financial support. However, my wife, Penny, and my daughter, Kimberly, were both diagnosed in the last year with a rare cancer “gene” called Birt-Hogg-Dube' Syndrome. Birt-Hogg-Dube' Syndrome, referred to as (BHD), is an extremely rare hereditary cancer “gene” that affects only 400 families world wide. Because it is so rare not many people know about it much less have ever heard about it. It is so rare that Penny’s personal physician had never heard of it and had to look it up. Her Dermatologist who has been practicing for over 30 years told Penny she was only the second case he had ever seen. BHD is a cancer gene that affects the skin, lungs and kidneys. There is no known cure for BHD at this time, but what Penny and I are trying to do is make the medical profession and people aware of this. Increased awareness will allow people who do have BHD and do not know it knowledgeable of the symptoms. One in three people get kidney cancer. Some of the signs of BHD are pale skin bumps on your face, ears, neck, or upper body. A spontaneous pneumothorax (collapsed lung) is another sign. Eight years ago while Kimberly was standing in the police station at work all of a sudden her lung collapsed for no apparent reason. She was rushed to the hospital and was out of work for eight weeks. Doctors had no idea why the lung collapsed and BHD wasn’t something they would have tested for. Kidney cysts and/or tumors are another sign. However, if you are not aware that you have BHD there would be no reason for your doctor to consider kidney and lung scans until problems arise and then it is to late.
Therefore, this is why I am once again lacing up my sneakers and reaching out to my family and friends to support cancer research and to make people aware of this rare cancer gene called BHD.