‘I thought we just had bad cancery luck in our family,’ says Li-Fraumeni Syndrome survivor

SAN DIEGO (KUSI) – International nonprofit that aids those with Li-Fraumeni Syndrome, Living LFS, has declared March 20 Li-Fraumeni Syndrome Awareness Day and the same month as Li-Fraumeni Syndrome Awareness Month.

On March 20, Living LFS will award 12 $530 hardship grants to families suffering with the costs of living with Li-Fraumeni Syndrome.

LFS is a rare disease that predisposes people to a wide range of cancers through a genetic mutation passed down throughout generations.

“Had I known in advance — I thought we just had bad cancery luck in our family — but had I known that it was actually a genetic thing, I could have started screening much earlier, and I could have caught that cancer before it ever hit,” Andi Last, Vice President of Living LFS, told KUSI’s Elizabeth Alvarez on Good Morning San Diego.

Quick facts about LFS:

LFS cancer forms before the age of 30 for more than half of those affected.

Men living with LFS have a 70% lifetime risk of developing cancer while women have a 90% chance.

If you or someone you know has a family history of cancer, consider genetic testing, where LFS can be found early and preventative action can be taken before the cancer develops.

The disease is also known to be very expensive — another reason for early detection.

Insurance may not cover treatment or even preventative screening.

Myriad folks with LFS struggle with paying for regular surveillance and treatment, especially in regards to several members of one family struggling to pay medical dues.