Chiquita Hessels lives with a condition that drastically increases her odds of developing cancer. — via healthing_ca raredisorders RareDiseases LFSAssociation rarediseasefdn healthing rare LiFraumeniSyndromeAwareness LFS rarecancer
I don’t know if there will ever be a cure for LFS in my lifetime but there are research and studies taking place worldwide.We rely on patients, families and friends affected with LFS for donations. It would be nice to be part of other grants or research studies [and maybe partner with] a known entity or Canadian celebrity [to bring more awareness].
The government has put a lot of money toward pediatric cancer and rare disease to be rolled out over the next five years, and LFS children and youth will benefit from that through access to the latest scientific advances, diagnostic tools, therapies and supportive care., along with other rare disease advocacy groups, to Parliament Hill to meet with MPs, tell our stories and help educate them on hereditary and rare cancers.
We live this story and our protocol of surveillance is part of our lives. We don’t stress about it. If there’s something to be worried about we’ll worry about it once the facts come in. My mother chose not to do genetic testing because she was in fear-mode — fear of the knowledge. Whereas I like to think I raised my kids to not stress unless there’s something to stress about. I tell other patients if you have to scream, scream; cry, have a temper tantrum. Get it out of your system. Then pick yourself up, and carry on.
May is Li-Fraumeni Syndrome Awareness month, and this year’s tag line is “Put Hereditary Cancer to the Test.” To learn more, go to the
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