Previvors have powerful knowledge
I just finished watching a video from TEDMED 2012 of a presentation given by Dr. Ivan Oransky. In the video, he speaks about predisease states. The presentation seemed interesting, at first, as he talked about many preconditions and the underlying issues of over treatment that can cause unnecessary harm to patients. He raised some good points.
6 minutes into the video, he began his discussion of “previvors”. I’m saddened at his lack of knowledge and insensitivity to women and men who have a known genetic mutation. When I was diagnosed with Breast Cancer at age 36, I went through genetic counseling and testing. Through this counseling and testing, I learned of my BRCA 2 mutation–the mutation that significantly increased my lifetime risk of both Breast and Ovarian Cancer. I quickly became involved in a wonderful organization called FORCE. FORCE coined the term previvor, and I am so thankful for what this organization has contributed to the lives of both women and men living with a BRCA mutation. FORCE has saved lives by increasing awareness, providing support, providing education, and providing a community for men and women affected by a hereditary cancer mutation.
Sadly, I know too many young women that learned too late about this mutation. These were mothers, sisters, daughters and friends that left us far too early because of a cancer diagnosis.
Dr. Oransky, I encourage you to learn more before you laugh off the term previvor, before you suggest that Mark Burnett start another TV show. You are talking about beautiful women who are taking measures to save their lives. Beautiful women who deserve to live. I am lucky to know so many previvors who are living wonderfully productive lives because knowledge gave them the power to escape a cancer diagnosis.
Dr. Oransky, I hope you will learn more about hereditary cancer mutations, about previvors, and about this wonderful organization that continues to save lives.
Posted on June 12, 2012, in brca, breast cancer, FORCE, hereditary cancer, Ovarian Cancer, Previvor, Uncategorized. Bookmark the permalink. 2 Comments.
Beautifully articulated Ellyn. I choked up when I read your quote “Beautiful women who deserve to live.” and thought about the amazing people from our community who are no longer with us. Thank you for your compassionate post.