My VHLA Walk Fundraising Page
Cheryl Hodge
Cheryl Hodge
Did you know that VHL (von Hippel-Lindau) is a genetic disorder where patients develop tumors throughout their lifetime.
If you're reading this its because you were sent a link to donate to the alliance for VHL: von Hippel-Lindau Disease. Its a rare genetic type of cancer that can affect up to 10 organs.
There are approximately 37k known cases in the US; only 200k worldwide.
I am one of those cases.
I was diagnosed in early 2003, and had to have my first brain surgery, less than a year later, 10 days after my 24th birthday. Every person's experience with VHL is unique; we all carry the disease differently. In my case, VHL affects my eyes, brain, spine, lungs, kidneys, pancreas, and spleen.
Though some patients may go through their life without ever needing intervention, that has not been my experience. I've had 15 surgeries, including 4 brain surgeries, and kidney cancer related to VHL.
I have to be monitored every 6 months. Which includes up to 7 MRI'S, a chest catscan, bloodwork and numerous doctor appointments. There is no cure. I'll have this for the rest of my life.
At the time of my diagnosis-more than 20 years ago- I don't think the alliance had more than 5 people; and still they guided me through with as much literature that they had and set me up with a clinical care center at Columbia in NY. Having their help to navigate this was a life saver.
They have grown and continue to guide as many as they can affected by this disease, both patients and caregivers.
I'm also seen at the National Institute of Health in Maryland. The research through the years for VHL has actually been able to help make 9 other life saving drugs for other cancers that are targeted to a specific area. It has advanced so much that there is a new medication that is capable of shrinking tumors throughout the body as opposed to a specific organ.
The slogan for the alliance is "The Cure for Cancer is in Our Blood" and I wholeheartedly agree.
If you are able to donate to the VHL alliance to help this research continue, any amount can help. Thank you.
With Love,
Cheryl
If you're reading this its because you were sent a link to donate to the alliance for VHL: von Hippel-Lindau Disease. Its a rare genetic type of cancer that can affect up to 10 organs.
There are approximately 37k known cases in the US; only 200k worldwide.
I am one of those cases.
I was diagnosed in early 2003, and had to have my first brain surgery, less than a year later, 10 days after my 24th birthday. Every person's experience with VHL is unique; we all carry the disease differently. In my case, VHL affects my eyes, brain, spine, lungs, kidneys, pancreas, and spleen.
Though some patients may go through their life without ever needing intervention, that has not been my experience. I've had 15 surgeries, including 4 brain surgeries, and kidney cancer related to VHL.
I have to be monitored every 6 months. Which includes up to 7 MRI'S, a chest catscan, bloodwork and numerous doctor appointments. There is no cure. I'll have this for the rest of my life.
At the time of my diagnosis-more than 20 years ago- I don't think the alliance had more than 5 people; and still they guided me through with as much literature that they had and set me up with a clinical care center at Columbia in NY. Having their help to navigate this was a life saver.
They have grown and continue to guide as many as they can affected by this disease, both patients and caregivers.
I'm also seen at the National Institute of Health in Maryland. The research through the years for VHL has actually been able to help make 9 other life saving drugs for other cancers that are targeted to a specific area. It has advanced so much that there is a new medication that is capable of shrinking tumors throughout the body as opposed to a specific organ.
The slogan for the alliance is "The Cure for Cancer is in Our Blood" and I wholeheartedly agree.
If you are able to donate to the VHL alliance to help this research continue, any amount can help. Thank you.
With Love,
Cheryl
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