The other day in the Facebook Family and Friends Support Group, a woman from Brazil shared that while her brother tested positive for LFS, he did not consider it a death sentence, because their mother had beaten cancer 5 times.  I thought about how many people in our group have benefitted by sharing our experiences, particularly our successes and the successes of the researchers that we deal with. It takes a village to help a family with LFS. Much of the battle is emotional. Every bit of it is personal. Even when you don't have LFS, if the disease affects your family you are Living LFS. This is Yasmin's story.Hello, my name is Yasmin and I live in Brazil. At the early beginning of this year, an oncogeneticist found out that my mother had the LFS . Some months afters that, me and my little bother, who is now 20 years old, also took the test. I don't have the mutant gene, but my brother does.

 We were not much surprised, to tell you the truth. My mother is an extremely intuitive, positive and strong woman, who fought cancer 5 times in her life (4 times breast cancer and 1 time skin cancer), and is still very energetic and healthy (and cured from all of them!)  That's why, maybe, me and my brother didn't face his results as a death sentence. But my mother and brother, were problably not the only people in my familly who had the syndrome. 
 
We lost our aunt (my mother's beloved older sister) to a very agressive breast/uterus cancer, even though she faced it bravely. She was 55 years old (she had cancer 3 times, and it's possible she was a mutant too). But that same aunt also had to deal with a huge loss. Her youngest child was diagnosed when he was still a 2-year-old baby with adrenal cancer, and it was pretty aggressive too. He died on his 3 year old birthday, one year before I was born. Unfortunately I didn't know him in person. We can't be sure, but the doctor affirms he could have LFS. That's a picture of him. His name was Tairo.


Our individual stories may be frightening and overwhelming.  But through this support group over the past year and a half, I have seen a change in the collective mental dialog.  Instead of LFS being considered a death sentence, and one to depressingly bewail, waiting for the next cancer to arrive, there has been a shift, to cautious optimism, with encouragement coming across the internet in the lonely back stretch.  The prevailing theme is one of determination, and hope.  And action.
When we give voice to our fears, we can begin to conquer them.  When we are tired,  tired of cancer, tired of fighting, we can reach out for encouragement. For compassion. For ideas.  For information.  For resources.
We have begun to change the culture, that place in our brains that focused on futility, and despaired of our 'predisposition' to cancer, twisting its meaning to become 'predestination.'  While death will come to all eventually, and cancer is likely to come to us, we are now facing it on our terms.   There are meaningful and effective things to do, both in our personal battles, as well as in our community.
We are doing them together.
While every day cannot be a raging success either on the mental or physical front, we are collectively improving on both, becoming stronger and more proactive.  I am proud to be part of this change.  I am grateful to be part of this community, cancer aside.
Lets get busy Living LFS.

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