Here’s a great blog post from Niecee Schonberger, MS, CGC, Coordinator of the Genetics for Life program at Sharsheret. Thanks Niecee!

I met Dina at the annual conference of the National Society of Genetic Counselors last month in San Diego. She gave an inspirational presentation about some of the issues surrounding genetic testing and genetic counseling, specifically as they relate to previvors. As a Genetic Counselor, she invited me to share what I know about cancer risk, testing and genetics with all of you.

Ever since FORCE coined the word “previvors” in 2000, the word has been slowly gaining ground. And this year, it seems to have really burst into the limelight: It was featured on CNN, The Today Show, and in Glamour magazine. The book I wrote, Previvors: Facing the Breast Cancer Gene and Making Life-Changing Decisions, was published by Penguin. And, thanks to FORCE, Rep. Debbie Wasserman Schultz, Bright Pink, and the Young Survival Coalition, the last Wednesday of September is now officially National Previvor Day.

However, with increased awareness comes increased confusion. Many people seem to misunderstand what the word “previvors” really means. I hope to help clear things up a bit.

While writing Previvors, I’ve come across so many brave, inspirational women. And one of them is a 23-year-old woman named  Claudia Gilmore. Claudia has launched a blog and web series called Previve, where she is documenting her experience as a previvor. She is planning on having a prophylactic bilateral mastectomy in January.

On the one hand, it’s sad that women have to make such a choice to prevent a disease they feel they’re destined to get. And experts are desperately trying to find better options. But on the other hand, how lucky are we that we can take charge of our health and fight breast cancer before it strikes.

Today marks the beginning of National Hereditary Breast and Ovarian Cancer Week. This is such a important step for women who have a high risk for breast cancer and ovarian cancer, breast cancer survivors, and anyone striving to find better ways to fight these terrible diseases.

This awareness will help with education, with funding, and with letting high risk women know that they do have options.

In the October issue of Glamour, I wrote an item entitled “Meet the ‘Previvor Generation'” Thank you, Glamour, for helping to get the word out about breast cancer previvors and the issues they face.

For anyone who read the piece and is looking for a quick resource list, here you go:

Resources for Previvors:

FORCE (Facing Our Risk of Cancer Empowered): The organization which coined the term “previvor”, FORCE provides a wealth of information and resources for women with a hereditary risk for breast and ovarian cancer. Previvors can connect with other high-risk women via the site’s message board. www.facingourrisk.org

While working on my book, I was fortunate to meet many inspirational previvors, medical experts, and breast cancer activists. Brilliant, dedicated men and women who spend their time trying to figure out ways to fight cancer before it strikes. One of the people who stands out is a young woman named Lindsay Avner. Only in her 20s, Lindsay has helped educate countless women who are at high risk for breast or ovarian cancer through her national non-profit organization, Bright Pink.

What is a previvor? A previvor is a person who has not had cancer but has a predisposition to develop it. In other words, a previvor is a person who has not had cancer but has higher than average odds of getting it because of certain risk factors. Previvors face difficult decisions regarding how to fight their risk, if at all. These men and women often take proactive steps and turn their fear into empowerment.