Li-Fraumeni Syndrome may be rare, but the families and individuals whose lives have been affected by LFS have been featured in local, national, and international media on many occasions. To mark Li-Fraumeni Syndrome Awareness Month in March, we are sharing some of that media coverage. If your LFS story has been featured in the media and you would like us to share it, please email hello@livinglfs.org. This is part one:
LFS: Multiple Cancers and Mounting Costs
Family of eight needs help with mounting medical bills due to cancer diagnoses
February, 2021: Amber, whose husband Jerome has LFS, shares with Living LFS: "My husband is currently battling Stage 4 Squamous Cell Carcinoma. In January, we learned that the cancer has spread and there are not many options. He has begun immunotherapy and palliative care. Although I do not carry the gene, I just completed treatment for Stage 2 Breast Cancer. And, 2 of our 6 children have LFS as well." Jerome's daughter Talia also had LFS. She passed in 2008. Read and watch the family's stories from local Baltimore media:
Edgewood group organizing drive-by to show support for father of six before his biopsy
Family of eight needs help with mounting medical bills due to cancer diagnoses
Edgewood families gifted turkey dinners days before Thanksgiving
Breast Cancer and Li-Fraumeni Syndrome
A family legacy of cancer provides hope when granddaughter is spared
May 5, 2018: "Born with a rare genetic mutation, Nichole Handy has had numerous cancers. Breast cancer was the most devastating — she was 18 the first time she was diagnosed."
"Mother and daughter had long-suspected they shared a terrible genetic issue — one of Handy’s doctors had once mentioned Li-Fraumeni Syndrome — but until Handy became pregnant with her daughter, they didn’t know for sure. That was when the family decided genetic testing was the right thing to do."
"'After I had my daughter, we both got tested,' said Handy. After a nerve-wracking, six-week wait for results, the family was relieved to learn Camryn did not inherit Li-Fraumeni Syndrome." Read Nichole and Camryn's full story.
Full Body MRI for Li-Fraumeni Syndrome
Cancer runs in my family, but now we can pick it up in time
2017: "When Natalie Coutts’ nephew, sister and uncle died from cancer in the space of five years, doctors were puzzled... When some of her relatives underwent genetic testing in the early 2000s, they discovered they had Li-Fraumeni syndrome – a rare hereditary condition caused by mutations in a gene called TP53."
"In 2012, she joined a trial at the Garvan Institute of Medical Research in Sydney with 29 other people who have Li-Fraumeni syndrome. The aim of the study was to see if having a whole-body MRI scan each year could detect cancers before they turned deadly."
"Ms Coutts says the study has given her renewed hope. 'It's really difficult but because I'm in the study, with the full body MRI, I just feel that I'm more in control. It happens yearly, I get various other tests as well in conjunction with the study. Having the screening it's just, you know, it's made me a lot more relaxed.'"
Read Natalie Coutts' story about Li-Fraumeni Syndrome and the benefits of full body MRI in New Scientist and SBS.
Natalie's brother Daniel died fighting glioblastoma in January 2021.
Living With Li-Fraumeni Syndrome
'It was something of a relief for me, but now, going forward, it's something I have to come to terms with as well.'
March 4, 2021: Law lecturer Dr. Brian Tobin of Galway, Ireland talks about fighting cancer, being diagnosed with with Li-Fraumeni syndrome, and how he lives with LFS on The Jennifer Zamparelli Show on RTÉ 2fm in Ireland. Listen to his interview (begins at 2 hour, 14 minutes mark).
Li-Fraumeni Syndrome Awareness Month
'I thought we just had bad cancery luck in our family'
March 6, 2021: "'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."
Genetic testing and preventative screening can save lives, LFS and the TP53 gene are important in cancer research, and living with LFS can be expensive! These are some of the points Andi Last shared on KUSI TV in San Diego to highlight Li-Fraumeni Syndrome Awareness Day on March 20th, and LFS Awareness Month in March. Watch the interview.
These are just a handful of many stories of families who are living with Li-Fraumeni Syndrome. Part two in the series will follow next week. If your story of living with LFS has been featured in the media, what did you think of the coverage? Did the media outlet do a good job of telling your story? Did it help raise awareness? To share your LFS media coverage on our blog, please email hello@livinglfs.org
3 Responses
Hi. I have Li-Fraumeni and I was making all the exams in Brazil. But I am now living in Ireland. Is there any way to have my exams done here free of charge? Or I will have to go to Brazil every year to have them done there? Any clue where I can find information about it?
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