Paule Laflamme’s Story: Living with Gorlin syndrome

Meet Paule Laflamme. She’s 50 years old and has Gorlin syndrome, also called basal cell carcinoma nevus syndrome (BCCNS) or basal cell nevus syndrome. This greatly increases her risk for developing basal cell carcinoma.

Interviewed by CSPA Board member Preet Bhogal

Please tell us about yourself. My name is Paule Laflamme. I was born and raised in Thetford-Mines, Quebec, and have been living in Toronto and its suburbs for the past 31 years. I’m currently an administrative assistant for a union office in Toronto. I am married and have two boys: Anthony, 21, and Ainsley, 14. Anthony also has Gorlin syndrome— he was also born with cleft lip and palate and he also has skin cancer.

Tell us something about your condition. I was diagnosed 26 years ago with basal cell carcinoma, a form of skin cancer, which by now has been removed from all over my body. I’ve lost my nose to skin cancer and had to have it completely reconstructed.

About 16 years ago I learned about Gorlin syndrome (GS). People with GS have pits in the palms of their hands and at the bottoms of their feet and are at higher risk for basal cell carcinoma. Fortunately, I found out about a support group called BCCNS Life Support Network and got involved in a clinical study for a new drug. And it’s working wonders! The skin cancer has [...] continue the story

Overcoming an Obstacle – RDEB-H

Bruce Gunn

During high school, my classmates were getting ready to take their driving tests and permits. I really wasn’t focused on that during high school and I knew I wasn’t ready. I have Recessive Dystrophic Epidermolysis Bullosa – Herlitz (RDEB-H) and there are a lot of things I wasn’t able to do. My special education teacher said encouragingly that I would be able to drive one of these days and have a car well-equipped with my needs.

It wasn’t until a couple of years later when I was working in a workshop for a non-profit agency for mentally and physically handicapped adults that I finally fulfilled this goal. Being able to drive was a requirement to work outside the workshop and have an opportunity for full time employment. Therefore, I took it on myself to ask a case worker to start the paperwork process to get my first step toward independence.

I knew my dad wouldn’t be able to teach me how to drive because I saw what my two older brothers and twin sister went through and I needed someone with a bit more patience than my dad! In the beginning, my parents had some doubts about whether or not I [...] continue the story

The Truth of It: Chris

At the time of the interview, Chris worked for Lakehead University as a systems administrator. He was married and a father. Chris was diagnosed with stage 4 melanoma at the age of 36. Chris passed away in January 2010.

Dear 16-year-old Me

This film was made possible thanks to the generosity of real Canadians and Americans whose lives have been touched by melanoma. These are not actors.

Chris

At the time of the interview, Chris worked for Lakehead University as a systems administrator. He was married and a father. Chris was diagnosed with stage 4 melanoma at the age of 36. Chris passed away in January 2010.