Miracles

Audrey C. likes to dress nicely anyway, but Sunday called for a little celebration. With the holidays this year had come some good news.

"My husband was so excited, he bought me two dresses," she said.

She opted for the red suit for church, the one with the gold buttons. Her gold jewelry added just the right touch.

"I gave my testimony," she said, "about the miracle of being healed."

Well, it isn't that she's completely healed of von Hippel-Lindau, the unusual disease that's plagued her for most of her adult life. But Audrey will take her good news in small batches, if that's how it must come.

Historically thought to be very rare, some research indicates that thousands of people may have VHL and not know it.

Audrey lost her right kidney and part of her left kidney to tumors. She had tumors removed from an eye and from her brain. The tumors used to occur about every ten years since she was first diagnosed 27 years ago, at the age of 32.

In recent years, the tumors have appeared more frequently. From time to time that has kept her from gardening, cleaning her house, and sometimes even prevented her from doing her beloved volunteer work with the Hospice in her local county. She has had surgery eight times.

She thought she was in for more surgery when tests indicated that she had three more tumors on her spinal cord and two on her brain. But she had further tests last week, and got the good news: the tumors either were not there, or they have disappeared.

Audrey calls it a miracle, though she knows that the miracle might last only until her next test.

"I was lying on the sofa one day, and I felt this warmth all over my body," she said. "I thought, 'Oh, someone must be praying for me.'"

So it was that she went to pick out her special holiday outfits. She looked her best Sunday. She does her best every day.

"People always say I look healthy," she said, "but I can't live an entirely normal life. Sometimes I feel like I have a monster inside me."

Hers is not an easy existence. Most people have never heard of VHL, and it is hard for them to comprehend. She is the North Carolina chair of the VHL Family Alliance. So far, she's found only 26 other people with VHL in North Carolina.

"It's important for people to have a support system, especially for a rare disease," Dr. James Zinser said. A family practitioner, Zinser never treated a person with the disease until he met Audrey. "Audrey is a very nice lady, and she's dealing with this as best she can."

At age 60, Audrey knows she has no guarantees for the future. "There are few miracles in medicine," said Dr. Carol Wadon, Audrey's neurosurgeon. "The incidence of recurrence of the tumors is high." Clifton has found that the best way for her to handle her disease is to try to help someone else.

"She is a really, really special volunteer," said Melissa Harris, hospice coordinator. "She's willing to do anything, and she's a very loving person. I'm sure her disease gets her down, but she always has a smile on her face.

More than anything, she'd love to find other people with VHL. She's constantly trying to educate people about VHL and expand the VHL Family Alliance.

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.

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