Connecting the Beautifully Twisted: D’Ana Reed International Scholarship

One Year ago today, we lost a good friend. D’Ana Reed would poke in on the Facebook support group, but she preferred to be with people. She would pack Lola, her trusty blow up mattress in the back of her car and head out to support friends, family and mutants in need. Where Gabby landed was sure to be a good time, complete with karaoke, disco balls and dramatic readings of books, usually with an accent.

Art credit: Inge Vandormael

When her metastatic breast cancer made traveling too complicated, D’Ana(known as Ladybug or Gabby to family and friends) would spend a lot of time Facetiming her crew. She taught my children how to blow straws into their armpits to make fart noises via FaceTime. D’Ana was brilliant and kind and effused life. She conquered years of treatment on her terms. She talked about her DNA being Beautifully Twisted, like her sense of humor. For our Tribute to Gabby, please see the link below.

In Memory of D’Ana Reed. Founder. Mutant. Sister. Friend.  D’Ana and her sister Courtney helped found Living LFS. They soon became our mutant sisters as w…Aug 24 2017www.livinglfs.org

Illonka and her son Kaj

Illonka, a member of our support group, wife, mom and mutant has been an advocate for LFS awareness for years. Her beautiful art piece of her son Kaj, who passed away just a month before his 5th birthday in October 2015, won the RareArtist contest in 2016 and since she could not make the reception in Washington DC, Living LFS sent 2 representatives to accept the award on her behalf.

“Love Never Dies” by Illonka. Winner of 2016 Rare Artist Contest.

In between when Illonka finished chemotherapy for her 3rd breast cancer and her scheduled surgery and reconstruction, fell the 2018 LFS International Conference. WWDD- What Would D’Ana Do? She would go. In order to help make this happen, Living LFS awarded Illonka the D’Ana Reed International Scholarship, because at times like these, being around people who understand is priceless. This is how Illonka was changed by the experience. 

The last week has meant a lot to me, more than I expected in advance. I can barely find the right words to include the last few days. It was overwhelming.

Grateful that I could go and could be, made possible by the Living LFS organization. This 4th INTERNATIONAL Li-Fraumeni (LFS) Symposium in Toronto, Ontario, Canada fell right between my last chemo therapy round and the big operation scheduled for a small week and a half.

I have LFS, a mutation in the TP53 Gene. Elephants have a 5 % chance of dying of cancer in their lives compared to 11-25 % in humans. It turns out elephants have many more p53 copies in their genes. Patients with LFS HAVE 1 Normal Active P53 Gene, healthy people have 2, African elephants have at least 40. What is LFS in ordinary people language? Compared to ‘ordinary’ people, I only have 1 Knight in my body who can compete against any cancer cells that have been created instead of 2 KNIGHTS. There are many different TP53 mutation types. People with this mutation therefore have a greater risk of developing cancer. I’m as they call it ” de novo” aka starter, the first. Which makes me the only “Mutant” in my family. There are many different degrees in LFS. Women with LFS have a 90 % chance of developing cancer and that high percentage is in the breasts. LFS and breast cancer are just a dream. Which immediately explains why I’m currently trying to fight my 3rd BREAST CANCER.

It was an honor to attend the lectures on the latest developments on LFS, and ask questions to the medical community. The Online Living LFS support group is great, but until this week I had never met anyone who has the same mutation as me and kaj.

Living with LFS, living with cancer, and living with cancer constantly lurking is lonely. A lot of people can listen to you, try to be for you and support you, but to really understand it is a difficult task. The scans, the fears, the treatments, the loss, the pain. In the last few days, I’ve been allowed to meet so many brave people who fully understand my struggle. It was incredible to finally meet them. The happy conversations, the fun and the tears we shared. MY LFS FAMILY, my friends, my tribe. I feel grateful and hopeful. Thank you!

#livinglfs
#lfsassociation


Perspective:P53 and Me in the New England Journal of Medicine

Living with LFS has many challenges, stresses, and choices. We do not get to choose our DNA or IF we will get cancer. We can choose whether or not to screen or make lifestyle choices that affect our health. In a recent perspective article in the New England Journal of Medicine, Shekinah N.C. Elmore, M.D. shares her experience with LFS as a patient, medical student and doctor. Most importantly, Dr. Elmore discusses the devastation, the emotional aspects of learning to live as an “Onco-mutant” and how it changed her outlook on life and health care.  The link below will take you to the article, P53 and Me.

P53 and ME by Shekinah N.C. Elmore, M.D. New England Journal of Medicine