Genetic Counseling for Li-Fraumeni Syndrome.

November 9, 2017 was the first Genetic Counseling Awareness Day!

Andi Last met up with Wendy Kohlmann, MS, CGC, a licensed genetic counselor at The University of Utah Huntsman Cancer Institute to explain the value of a genetic counselor after a diagnosis of Li-Fraumeni syndrome. Wendy discusses the importance of life long meetings with genetic counselors when you have LFS. Sometimes new information is available that could affect screening or treatment, sometimes what the patient can understand changes as they get older and different issues present as we live LFS. A Genetic Counselor is a vital part of your CARE COMMUNITY.

Finding Your LFS CARE CommunityOne of the first questions mutants ask after diagnosis is- where should I go to receive the best car…Feb 17 2014www.livinglfs.org

 

Find a genetic counselor though the National Society of Genetic Counselors at NSGC.org or FindAGeneticCounselor.com

 

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For more information, please read some of our previous blogs on Genetic Counseling.

Genetic Counseling in LFS.

LFS- A genetic counselor’s perspective.

We are very thankful to Wendy for taking the time to explain the importance of genetic counseling in LFS and for her passion and dedication to our rare families!

More segments of our interview with Wendy are coming very soon, from Learning Li-Fraumeni Syndrome: a brand new video and audio podcast presented by Living LFS – Li-Fraumeni Syndrome! Like and follow our page to receive the latest updates.

 


LFS in the News: PBS NewsHour Report on Elephants, Cancer, and TP53

Elephant genes hold big hopes for cancer researchers: Elephants have 100 times more cells in their bodies than humans, which should make them far more vulnerable to cancer than we are. But less than 5 percent of elephant deaths are linked to cancer, which researchers credit to the animals’ abundance of cell-suppressing genes — genes that might represent the next step forward in the fight against cancer. Special correspondent Jackie Judd from PBS NewsHour reports.

This is exciting for patients with Li-Fraumeni Syndrome who have mutations or deletions in their TP53 genes and results in faulty p53 protein. Understanding TP53, the protein and how it affects cancer is a step towards better screening and treatment for these rare and special families. Thank you to Dr. Schiffman for his passion and dedication to our families, to PBS for sharing the story and the Means family for telling a bit about what it is like living with LFS.

DR. JOSHUA SCHIFFMAN: I don’t promise my patients it will happen, because I don’t want to have them disappointed. But if I didn’t believe this would work, I wouldn’t be trying it.

Previous Living LFS Blog on Dr. Schiffman’s work with Elephants. The Elephant In the Room, Dr. Schiffman takes on TP53