One essential tool in getting a diagnosis is to understand the risk factors that run in your own family.
VHL, of course, is one such issue. But nonetheless, EVERYONE carries between 5 and 10 potentially nasty genetic risk factors. Most of those we do not yet know or understand. But some of us know a few of them now -- like VHL.
In 1992 I worked with Myra Vanderpool Gormley, a syndicated columnist who wrote extensively about genealogy, to write a pamphlet about collecting family history information that pertains to our health. If you haven't seen it already, you can download a copy for free from the VHL website:
http://vhl.org/power/healthtree.pdf
Over the past two years there has been increasing focus on knowing your family history. The Office of the Surgeon General has a free online tool to help you build a family tree chart, and the CDC has focused energy on this as well.
The Genetic Alliance has put together two pamphlets that may be customized for particular "communities" --define community however you wish. We have an opportunity to customize it for the VHL community.
I'd like to introduce Melinda Pearl, an intern with the Genetic Alliance, who will be working with us this semester to customize the booklets in the ways YOU would like to see them customized. We need your feedback to get them right!
Melinda, please introduce yourself to this community and tell us more -- Welcome!
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Booklet on Family History
- By joyceg98
- Posted January 28, 2009 at 7:10 pm · 1 reply
- In Getting a diagnosis
- Shared with the public
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1 reply
- By mep0209
- Posted January 29, 2009 at 1:36 pm
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Hello! My name is Melinda Pearl and I am the genetic counseling intern at Genetic Alliance. I am a senior at The George Washington University, majoring in journalism, and am planning on applying to graduate school to become a genetic counselor. Here at Genetic Alliance we are working on an exciting project on community centered family health history. Two booklets have been created, A Guide to Family Health History and A Guide for Understanding Genetics and Health, and are now being used as templates so communities can customize their own books and distribute them! Our motto is that accessible tools created by the community for the community can empower individuals to discuss family health history and subsequently make healthy lifestyle choices. This is where we need help from community members like YOU!!
In the first booklet of the series, A Guide to Family Health History, we have five spaces for a diverse range of personal stories. Stories in the past have ranged from individuals who live with a hereditary disease to individuals who are adopted and are trying to piece together their biological family health history. Additionally, we are looking for one individual to provide us with a family health history so we can piece it together as a pedigree for another section of the booklet. With each story we would love to have the individual’s photo, however if you are uncomfortable submitting your photo that is fine as well.
If you are interested in sharing your personal story, please email me at melinda@vhl.org and we will set up a time for a phone interview. I look forward to hopefully being in touch with some of you soon!
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