It’s Easy for you! ...
and it's Gold for us all

Over the Thanksgiving holiday a VHL member was undergoing a procedure to drain a pancreatic cyst. I suggested donating the liquid that came out of the cyst. She replied, “Who wants it? It’s only water.” She really didn’t want to be bothered and didn’t have access to email or fax to sign a consent form. It was a holiday weekend, the pain was excruciating and she thought it was insignificant.

I asked her: “If it’s easy for you, will you do it?” I was told yes. Her interest was then relayed to the doctor by the patient. The doctor took some liquid for himself and put the rest in the fridge.

I called the NDRI, the National Disease Research Interchange, on Friday, the day after Thanksgiving, the same day the procedure was done. The NDRI called the VHL patient and received the consent over the phone, the name and number of the doctor, and had the fluid picked up.

Later I received a phone call from the patient. She was amazed. “What do they think it is, GOLD? They were so excited!” Yes, it is GOLD to them ... to us all.

For the advancement of VHL research, donate anything you no longer have use for. (If you can hang a lesion from a chain, that’s another story!) But any tissue or fluid removed like this is precious for research. Help us ... and help yourself ... find answers. Even if you don’t think it’s VHL-related, donate it. Anything that comes from a VHL patient is GOLD! Let’s recycle for all of us!

Just call 1-800-222-6374 and follow the prompts. If you need help or you can’t handle everything because you are overwhelmed, call me. I would be happy to assist. I can be reached at 800-767-4845 extension 711.

Be well,

Gale Lugo , Southeast Regional Chair

800-767-4845 x711

For more information and forms, go to

http://www.vhl.org/bank

As printed in the VHL Family Forum 15:1, January 2007. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.