Kim's Story- in her own words I am presently a ripe young age of 47. This is my story “in a nutshell.” Life was normal as a child until my Dad died. I was almost 7 years old. He died October 24, 1968, at the age of 30. My Dad died from what we now know as VHL. Von Hippel-Lindau (VHL) is a genetic condition involving the abnormal growth of blood vessels in some parts of the body which are particularly rich in blood vessels (please click on the sidebar link "What is VHL" to learn more). On autopsy, my Dad had multiple brain/brainstem tumors, spinal and kidney tumors, as well as being blind in one eye. The brain/brainstem tumor is what eventually caused his death following surgery. I was diagnosed at age 13 with retinal lesions. I had many laser surgeries and many major surgeries on my left eye, with ultimate blindness in 1990. After many years of pain in the dead eye, it was eventually removed in 1992. Surprise for those of you who didn’t know! I now battle with retinal lesions on my good/seeing eye and also have a large optic nerve tumor. This is untreatable presently, as all methods have failed or caused worse vision, and the nerve is connected to your brainstem. Recently (2009), I was diagnosed with a macular hole, affecting the area of the eye that controls central vision. Unfortunately, I only see about one half of faces, have difficulty reading, telling time, etc… My “terrible twos” came in my 20’s, at the age of 22, after dizziness, headaches and many falls. I had my first brain surgery. In and out for 48 days, I was eventually released from the hospital only to find there was another tumor directly behind it. The following summer, the “zipper” incision was reopened and this time I felt much better. What a way to spend my college summers! I still remember going out to the bars and my hairpiece falling in to a puddle or shifting on my head with a gust of wind. It was actually quite humorous.
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Kim's Blog
Visit Kim's personal blog above to read about her journey to wellness.
Other Cool Stuff
Foundation Donation Update
Kim has already used a portion of the funds that have been donated to purchase her new prosthetic eye!
For your Info:
YouTube - Rare Disease Day 2009
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VHL- Von Hippel-Lindau Disease VHL is a rare, genetic multi-system disorder characterized by the abnormal growth of tumors in certain parts of the body (angiomatosis). The tumors of the central nervous system (CNS) are benign and are comprised of a nest of blood vessels and are called hemangioblastomas. Hemangioblastomas may develop in the brain, the retina of the eyes, and other areas of the nervous system. Other types of tumors develop in the adrenal glands, the kidneys, or the pancreas. Individuals with VHL are also at a higher risk than normal for certain types of cancer, especially kidney cancer. To learn more about VHL please go to the link at the top of the page.
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