It's a fictional hospital packed with famous actors as patients - but people who are personally affected by VHL, Von Hippel-Lindau disease, say it's about time that the mass media starts paying attention to the rare disease that devastates families worldwide.
In a recent episode, Grey's Anatomy actor Scott Foley portrays a VHL patient who has been diagnosed with a life-threatening adrenal tumor. VHL is a rare genetic disorder involving the abnormal growth of blood vessels in some parts of the body which are particularly rich in blood vessels. It is caused by a flaw in one gene, the VHL gene. One patient can have three tumors on a brain, another on the pancreas and yet another on the kidney. About one in 32,000 people around the world have been diagnosed with the disease -- which usually strikes patients in their teens and twenties.
But the disease takes different forms in different individuals. Altheada LaVerne Johnson died from complications caused by VHL last year after a 20-year battle. It's a disease that has been carried through her family's generations -- her father, her older brother, her sister -- and now her nephew is battling VHL.
Altheada Johnson's husband, Fred Johnson, devotes a great deal of time trying to raise awareness about the horrific illness. He is a board member with the VHL Family Alliance and he says he's thrilled that Grey's Anatomy now has an ongoing character living with VHL, but he wishes the medical community paid more attention to what families affected by VHL are going through. On television, the cast and crew get to go home after the episode, but for real life families, it's a never ending drama.
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