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Man Alive: May is VHL Awareness Month

First Coast News Associate Producer and Editor Avery Latta-Raines shares his story while raising awareness of a rare cancer-creating disease.

JACKSONVILLE, Fla. — Von-Hippel-Lindau disease, otherwise known as VHL, is a genetic mutation that causes cancer to form in the body. This process tends to happen while in utero.  

According to rarediseases.org, this disease is so rare, that an estimated one in every ten thousand people is documented in the United States to have this illness. The only reason I found out is because my great uncle had an aneurysm burst behind his eye and I was advised to get checked to make sure I didn't have any aneurysms. 

Now, two years after my diagnosis, the tumors in my eyes are gone and I have yet to need any surgeries or treatments of any kind. Chandra Clark is the executive director of the VHL Alliance, a group dedicated to helping those affected by the disease, and she says that those living with VHL should "exercise regularly and have limited alcohol consumption."  

According to healthcentral.com, when it comes to identifying symptoms of VHL, "Starting in young adulthoods, VHL can cause blood vessel-rich tumors to grow in various areas of the body, which can cause damage by occupying space, although they are usually not cancerous." 

If you think you have Von-Hippel-Lindau disease, talk with your doctor or a specialist so that they can give you the best information.  

I personally go to Moffit Cancer Center in Tampa, Florida, for regular checkups and they have received multiple awards for being the best place to handle VHL. 

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