Hereditary Cancer Advocacy and Looking into My Genetic Inheritance
#GeneticTestingSavesLives #germline #GermlineMutation #GeneticTesting #previvor #HereditaryCancerSyndromes #HereditaryCancer #GeneticCounseling
#BRCA2 #BRCA1 #CHEK2 #ATM #PALB2 #PTEN #MLH1 #MSH2 #MSH6 #TP53 #KnowledgeIsPower
This is the part that
is often missed when trying to "connect the dots" in hereditary cancer.
Sadly,
this lack of knowledge about how one single germline mutation can cause
different cancers in family members is why genetic testing is often not
recommended for some individuals who may be at risk for hereditary cancer. I know,
because it tragically happened to my late wife.
That's why
sharing family health history, genetic testing, and genetic counseling
are so important. Genetic testing saves lives. Knowledge is power.
For more info about hereditary cancer, go to www.genetinary.org
I created this infographic for My Faulty Gene, a nonprofit organization. My Faulty Gene "provides information and assistance to underserved, uninsured, and underinsured individuals whose family medical history suggests genetic testing might be helpful in identifying an increased risk of disease due to a genetic mutation."
So many people seem to struggle with genetics. They just don't seem to understand that our DNA connects us to so many people -- and diseases. Sometimes I get confused looks when I try to explain about the BRCA2 germline mutation in my late wife's family and how so many in her family are affected by the exact same variant. That's why I created this.
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Please Note: There's a new graphic.Download it here  |
When I talk or write about hereditary cancer as an advocate, I often mention "germline" when referring to mutations that can cause cancer. But I’ve come to realize that many people don’t seem to know what I’m talking about. So I created this graphic about germline mutations and had it reviewed by a certified genetic counselor.
Tragically, it's because of the lack of basic understanding of genetics, even among some health care professionals, that I’m now a widower.
One germline mutation, a broken BRCA2 gene, that I can now recite by heart, has caused several different cancers and numerous cancer deaths in my late wife’s family. The same BRCA2 mutation has been passed down in my wife’s family for at least four generations. And it might have already been passed to the fifth generation.
But now that the specific mutation has been identified, the cycle of cancer can be broken. That’s why genetic knowledge, genetic testing, and the sharing of family health information are so important.
What is in your germline?
“Grief tourist” is a term I’ve heard used many times in the cancer and grief communities that I’m now, unfortunately, a part of. And I have witnessed grief tourism personally. Sadly, it’s a far too common occurrence.
I created this a while back but was reluctant to share it because I didn’t want anything to take away from my hereditary cancer advocacy work. But damn, I even see it in my cancer advocacy work, so I decided to create this graphic.
Encountered any grief tourists in one of your difficult journeys in life? Share the graphic.
Talking openly about
health history with your family is important. Documenting that
information, especially if there is a family history of cancer, can be
life-saving.
There have been more than 50 hereditary cancer syndromes discovered so far. Many of the cancers associated with these syndromes can be prevented.
Being aware of a family history of
cancer can provide important information that you and your physician can
use to determine if you’re a candidate for genetic testing, more
frequent screenings, and/or other preventive measures.
Download a free Family Health/Cancer History Pedigree PDF. There’s no advertising
or donations associated with this, it’s just a simple tool I created to
help you learn about your family’s health history.