Li-Fraumeni Syndrome (LFS) is linked to a mutation in the TP53 tumor suppressor gene.

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It's very difficult and sometimes lonely to face a rare syndrome. Meet the Living LFS community.

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Radiation can be difficult to understand- what’s good, what’s bad, what’s relative? People with LFS have radiation sensitivity, our bodies do not react to insult like a normal person’s. Perhaps that explains our unique sense of humor too.... ... See MoreSee Less

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Generally, everyone should be cautious around radiation, but also realize radiation is all around us. When we are diagnosed with LFS, one of the first things we are cautioned is to avoid radiation. So what exactly does this mean? Should we avoid dental x-rays? What about the airport scanners? Do cell phones cause cancer? Can we eat bananas? Did you even know bananas are radioactive? It has to do with the Potassium in bananas, there is an isotope of Potassium that decays … read more

Years ago, we asked our support group members, What is one thing you wish everyone knew about LFS? As always, the answers were heartfelt, emotional, and representative of the hardships we face living with a hereditary cancer syndrome. Since LFS is rare, knowledgeable doctors are tough to find, especially close by home. Since early detection is the best chance at cure and there are so many possible LFS cancers, the screening can be pretty extensive and quite expensive. This does … read more