Eddie's Story

In June my wonderful husband and friend Eddie passed away at age 53. Perhaps his story can help others understand the importance of early detection.

His journey with VHL started at age 17. He was diagnosed with pheochromocytomas (pheos) on both his adrenal glands. One was removed then, the other at age 19. The doctors never mentioned VHL.

In 1985, his mother, Alva, was diagnosed with an angioma in her right eye. Her ophthalmologist was the first physician to tell our family about VHL. She was told to seek medical care immediately. She had renal cell carcinoma (RCC) in her right kidney and one pheo. Both were removed, and thankfully she is still doing well today in her 70's. How foolish we were not to begin to have Eddie checked then! Why didn't the doctors tell us what to do?

In 1992, Eddie was diagnosed with RCC in both kidneys. He had his right kidney and two-thirds of his left kidney removed. We were assured that he was going to be fine.

Eddie was a very proud man who lived life to the fullest. He worked hard to get his health back, but due to the extensive surgery and other complications there were many limitations. Eddie was no longer able to work, and applied for Social Security Disability. Lost paper work, mistakes by the government, and a series of rejections -- I watched as the government stripped away pieces of his pride. Family, friends, and outside sources were our saving grace, or we would have lost everything. Worst of all, there was no health care coverage while we fought this battle.

When, after two and a half years, his disability coverage was approved and health care coverage reinstated, the cancer had spread to his left lung.

He never gave up hope, he was an eternal optimist. He was always so positive that you had no choice but to believe he would beat it. He was a good person with so much to give. My children and I have received many cards and tributes letting us know how he touched their lives in so many positive ways.

Our biggest fear through all of this was our children. Would they have VHL? Three days before Eddie died we received a phone call telling us that they had found the alteration in Eddie's and his mother's VHL gene. It was the best news he could have received. He was happy to be leaving this "roadmap" for his children and others in his family. At least now they will be able to determine whether or not they carry the altered gene, and through early detection they will receive medical care to keep them well.

As published in the VHL Family Forum, 4:4, December 1996. For permission to reprint, please contact the VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.

mystory