Trishia Shelly-Stephens

Contact Trish: Trish@LivingLFS.org

I’m Trishia and I’m so honored to be a part of Living LFS. In 1992 I was diagnosed with breast cancer when I was 21 years old and pregnant. 6 months after giving birth to my son, I was diagnosed with breast cancer in my remaining breast. When my son was 2 years old he was diagnosed with a rhabdomyosarcoma. It was at that time that I asked for genetic testing.
Unfortunately, genetic testing was pretty new in 1995 and we were some of the first people that were tested for Li Fraumeni Syndrome, and we were told our results were ‘inconclusive’. In 2008, when another family member was diagnosed with breast cancer, we brought up our results with a new genetic counselor. It was at this time that we found out that I did, indeed, have Li Fraumeni Syndrome and a p53 mutation. Both of my parents tested negative, so I am what is called a de novo, or spontaneous, mutation. My son tested positive.

Being officially diagnosed with LFS led me on a wild good chase for information, and there wasn’t much available. In 2009 I found a forum for LFS and was thrilled to connect with others who had LFS, or as we lovingly call each other, mutants. That connection has gotten me through some very trying times, including my son’s 2nd, 3rd and 4th sarcoma diagnoses.

I have always believed that our job as a human is to use the experiences in your life to help others, and I knew that having LFS was no different. To me Living LFS means not just dealing with the grim realities of having Li Fraumeni Syndrome, but actually living a full, happy and productive life with it. It means supporting others with information, a kind word, a shoulder to cry on and lots of laughter. It’s these values and my involvement with Living LFS that led to our family opening Snarky Cancer, LLC. A screen printing and apparel shop that specializes in hilarious cancer apparel and fundraising for cancer families and non-profits.

All of our board members fully embrace the Living LFS motto of Fighting Cancer and Supporting Mutants. We look forward to serving our community and helping us all truly LIVE LFS.