I discovered Li-Fraumeni syndrome one week before quadrant surgery for breast cancer. I found out about the cancer in April 2023, underwent chemotherapy, and reduced it to the point where only the quadrant would be removed. However, after genetic testing, everything changed. Today, I'm undergoing immunotherapy, and I believe it will continue until October. I
I discovered that I have Li-Fraumeni syndrome in 2021. At the time, my mastologist asked me for a genetic test due to the extensive history of cancer in my family (mother, uncle, grandmother, among others). I have never had any type of cancer. In 2022 I chose to perform a preventive bilateral mastectomy.I follow
Larry Ingrassia’s, A Fatal Inheritance, is the most comprehensive biography of Li-Fraumeni syndrome for the lay reader to date. Though this book reads like a riveting medical mystery, it is also an informative resource for medical students and providers, genetic counselors, and families riddled with early onset, rare, and/or multiple cancers, and even the
Culture Matters: Individuals affected by LFS reported a wide range of experiences with this rare and poorly understood condition. Limited availability of information often contributed to delays and denial in diagnosis. Their accounts highlight critical yet underexplored issues—such as guilt and helplessness—that warrant urgent attention. Future policies should be informed by these perceived needs
Medulloblastoms are known to be associated with Li-Fraumeni syndrome. NIH National Library of Medicine: While leukemias are the most common type of malignancy affecting the pediatric population, brain tumors are the most common solid tumors in this population. Medulloblastoma is the most common malignant brain tumor in children, constituting nearly 20 percent of all pediatric
Adolescents and young adults (AYAs) reported family communication difficulties related to LFS that negatively affected their emotional well-being. Stress related to LFS and major life changes both contributed to and were worsened by these family challenges. Clinicians can support AYAs with LFS by asking about family communication, responding with empathy, offering resources to help with
From Amazon: The most comprehensive guide available on hereditary cancers, from understanding risk, prevention, and genetic counseling and testing to treatment, quality of life, and more. Up to 10 percent of cancers are caused by inherited mutations in specific genes. Finding out that you or your loved ones may be at increased risk of developing
This study examined anxiety and depression in mothers of newborns carrying the TP53 p.R337H variant in southern Brazil. Mothers of carriers showed higher anxiety shortly after genetic testing, but anxiety decreased within four months. Depression levels did not significantly change. Ongoing psychological support may be needed for mothers with existing mental health concerns. (2022)
Author Sharek A. Gadd was born in a midwestern commune 1971, and grew up in a nine-member family struggling with Li-Fraumeni syndrome. The illness, deaths, and grief drove Mr. Gadd to join the U.S. Army. After his military service, he returned to White River, Indiana, wherein practices multimedia arts and crafts. This is his previously
LFS and Living My Best is an LFS resource for children aged 8 -13 by the LFS Association's Genetic Counseling Advisory Group. Download and review the booklet and decide if it’s the right time to share with your child. The booklet is currently in English and translated into Portuguese, with many other versions coming soon
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