Von Hippel-Lindau Syndrome
You learn how to deal with the bumps in the road VHL is to cause; you get over them and go on with your life until the next bump - Altheada Johnson RD
image by: VHL UK/Ireland
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Altheada’s Story – a Patient’s Perspective
When I was finally diagnosed with VHL... I had already had an EMG [electromyogram], 8 weeks of chiropractic treatments, countless CT’s, MRI’s, a myelogram, an angiogram, and extensive spinal cord surgery. A hemangioblastoma and the associated cyst (a jelly-like substance causing a “sausage” in my spinal column, according to the neurosurgeon) had been surgically removed and sent to pathology.
The doctor told me, “Ms. Johnson, you have a genetic disease called von Hippel-Lindau. You will need to have your eyes and kidneys looked at as well.” All the time I’m wondering what he is talking about. Where could this have come from? While I felt devastated by the news then, I have since realized…
Resources
Rob’s story: Living with Von Hippel Lindau
It was discovered that it was inherited from my Mother’s side. VHL has a 50/50 chance of being inherited by off-spring and it doesn’t miss a generation.
What Having a Brain Tumor Has Taught Me
It’s been 16 years since I first learned that I had a brain tumor. Actually, I had four of them. I have a condition called Von Hippel-Lindau (VHL) syndrome and brain tumors are just one of the manifestations that can result. Up until that point, however, I had not had to deal with the brain tumor aspect of the disease.
Altheada’s Story – a Patient’s Perspective
While VHL is a serious disease, it does not mean your life is over. You learn how to deal with the bumps in the road VHL is to cause; you get over them and go on with your life until the next bump.
VHL Alliance
The VHL Alliance (VHLA) is dedicated to research, education, and support to improve awareness, diagnosis, treatment, and quality of life for those affected by VHL.
VHL Canada
Social-emotional, informational, and practical support.
VHL Europa
Supporting existing national VHL patient organisations and helping to set up new and foster cooperation between these national organizations in Europe and develop a common policy, if possible, between them, and to do everything that is related to this in the broadest sense, either directly and indirectly,
VHL UK/Ireland
VHL,HLRCC and BHD are genetic forms of cancer. VHL UK/Ireland supports patients who may battle tumours throughout their lives and raises funds for research
Alianza von Hippel-Lindau España
Through our own experiences we have discovered that this disease is very unknown to doctors. At the beginning of the diagnosis, the feeling of loneliness, helplessness and sometimes panic made us decide to create an association that promoted awareness of von Hippel-Lindau disease among doctors. On many occasions it is not easy. For this reason, those affected are provided with the same information, so that they can learn closely what it consists of and what they must do to maintain the best possible quality of life.
Cancer.net
Von Hippel-Lindau syndrome (VHL) is a hereditary condition associated with tumors arising in multiple organs. The tumors in VHL include hemangioblastomas, which are blood vessel tumors of the brain, spinal cord, and eye. The eye tumors are also called retinal angiomas.
NINDS
Von Hippel-Lindau disease (VHL) is a rare, genetic multi-system disorder in which non-cancerous tumors grow in certain parts of the body. Slow-growing hemgioblastomas -- benign tumors with many blood vessels -- may develop in the brain, spinal cord, the retinas of the eyes, and near the inner ear. Cysts (fluid-filled sacs) may develop around the hemangioblastomas.
NORD
Von Hippel-Lindau disease (VHL) is caused by a gene mutation which frequently induces both nonmalignant tumors and malignant tumors (or cancers) that can spread to other organs (become metastatic). Tumors may develop in up to ten different parts of the body.
Patient
Previously, the average life expectancy for von VHL disease patients was 50 years; the main causes of death were RCC or CNS haemangioblastoma. Current screening protocols and treatment have improved this prognosis.
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