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.

 


In Memory of D’Ana Reed. Founder. Mutant. Sister. Friend.

 

D and Court

D’Ana and her sister Courtney helped found Living LFS. They soon became our mutant sisters as we worked to bring those living LFS together. D’Ana lived fully and completely and shared her positive energy and laughter with anyone she ran across from childhood friends, to chemosabes(chemo friends) to her mutant family. The way D’Ana lived is very much the foundation of Living LFS and refected in our core values: Community, Compassion, Respect, Integrity and Levity. D’Ana had brilliant ideas and was the first we’d go to when we needed ideas. She came up with the idea for our first T-shirt fundraiser- Have You Hugged A MUTANT Today?

D tre mills ramer mutant

She was the first to pack up and hit the road to visit a friend in need, her mutant family just gave her many more opportunities and these connections were so valuable, she wanted others to have the experience too. After many years of living with metastatic breast cancer, D’Ana passed away, as she lived, with the ones she loved most right there. We lost more than a mutant sister that day.

 

Courtney shared with us D’Ana’s words of wisdom and we know she’d want us to share them with you.

 

My sister and I have shared a lot of things over the years, but of all the things I could have possibly shared with her, a genetic disorder that makes you prone to multiple cancers certainly was not on the list. I wish this was one of the things I could have hidden from her so she couldn’t have it, like the “good Barbies” and other toys I used to stash in order to keep them from her clutches. If I could go back in time, I would much rather share those than share this. But we are here now together as Mutant Sisters and making the best of it. So I will share with you a few things that I have shared with her in hopes that you too will be able to find some bright spots on your journey.

Surround yourself with POSITIVE ENERGY.  A positive attitude and keeping company with positive people can and will get you through anything. Sure we all have bad days…we’re entitled, but try not to let them weigh you down.

BE SELFISH! Now is not the time for you to take care of the needs of others, they should be   reminding you to take care of yourself so you can be as healthy and happy as possible.

LAUGHTER is a daily necessity. Cancer is no laughing matter, but let’s face it…isn’t everything a little bit easier when done with a smile and a little bit of giggling?

LIVE life FULLY AND COMPLETELY. Be proud of who you are and the fact that you are a fighter. Keep trying new things, meeting new people, traveling and experiencing all that life has to offer.

-D’Ana Reed