Mutant is a term of affection and strength for many in my community of people with a TP53 gene mutation. Our genetic mutation makes us highly susceptible to developing cancer, so all our accomplishments in spite of the terrible hand we’ve been dealt are a source of pride. We repossess…

This is my artistic interpretation of my Li-Fraumeni Syndrome fight. For more information and to support those with this hereditary cancer condition, please visit LivingLFS.org.

Fannie’s recent post on the Living LFS blog reminded me of my own analogy. A member of our private support group posted a fun thread of “you know you’re an LFS mutant when…” and this was one of my answers: When people say, “Life is short for everyone. I could get hit by a bus tomorrow.” and your response is, “Now imagine that bus has already hit you and your family members multiple times and it’s chasing you across town…. Forever.”

My dad’s cousin contacted me recently to ask about our genealogy, since I’d done some research into our family tree back in the early 2000’s. I re-found some of my findings and forwarded them along. …

People with a new Li-Fraumeni Syndrome diagnosis regularly join our private Facebook group feeling overwhelmed, fearful, scared and sad, looking for support. And no wonder — being given such seemingly hopeless news is emotionally traumatic. My first post to the support group, 9 days after my LFS diagnosis, was completely…

In the wee hours of December 1, 2009, I took myself to the emergency room doubled over in abdominal pain: gallstones. I was scheduled to have my gall bladder removed the next day. The laparoscopic surgery would be minimally invasive, just two tiny, camera-guided incisions, one in my belly button…

I looked up from the drum kit and immediately thought I had a brain tumor. I was seeing double. I put a hand over one eye, then the other. Only the vision in my left eye was doubled, my right eye vision was the usual lousy. My eyesight has always…

I am a mutant. Unlike the X-Men, I don’t have super powers. In fact, unless gene editing becomes commonplace in the next few years, I am likely to die early as a result of my genetic mutation. Unpleasant truths, but true nonetheless. TP53 is known as a “tumor suppressor gene.”…

Coworker: Welcome back! How was your trip? Where did you go? Me: Actually the nonprofit I’m involved in was an exhibitor at a cancer conference in Toronto! Coworker: Oh, what kind of cancer? Me: (Give her the short version about LFS and my family history) Coworker: Oh that sounds just…