Von Hippel-Lindau (VHL) is a rare disease, a genetic cancer syndrome that causes a series of tumors in many different parts of the body.
On December 2, Grey's Anatomy introduced the first of three episodes that portray a patient with VHL. Medical dramas such as this can play a powerful role in increasing awareness of a rare disease, but it's critical that the disease be portrayed accurately.
By featuring VHL, the producers of Grey's Anatomy and ABC News are in a unique position to increase public awareness of this syndrome, correct misconceptions and demonstrate respect for people living with VHL.
There's still no cure for this disease, but people living with VHL are able to live full and healthy lives if they have the proper diagnosis and access to treatment. Please urge the producers of Grey's Anatomy and ABC News to tell the real tale of VHL!
We are glad to see Grey's Anatomy is featuring a series of episodes that portray a patient with Von Hippel-Lindau (VHL). Medical dramas such as this can play a powerful role in increasing public awareness of a rare disease, but it's critical that the disease be portrayed accurately.
We encourage Grey's Anatomy to add a public service announcement about VHL in a future episode and ask that ABC News expand their medical coverage of VHL.
VHL is a rare disease, a genetic cancer syndrome that causes a series of tumors in many different parts of the body. About one person in 32,000 has VHL, and because it is hard to diagnose, thousands may be suffering without knowing it.
There's still no cure for this disease, but people living with VHL are able to live full and healthy lives if they have the proper diagnosis and access to treatment.
The producers of Grey's Anatomy and ABC News are in a unique position to provide better information to the public about VHL, correct misconceptions about the disease and demonstrate respect for people living with VHL.
Please tell the real tale of VHL. More information about VHL is available from the VHL Family Alliance at http://vhl.org. The VHL Family Alliance, founded in 1993, brings together patients, their families and friends, and physicians and researchers in a coalition to learn about VHL and provide information to patients and physicians on the best ways to diagnose and treat this disease.
