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

CSPA Gorlins PatientPlease 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 basically disappeared. The pitting is also gone.

Now everyone looks at me and tells me that I’m glowing. But one of the side effects of the drug is that I’ve lost my sense of taste— so everything tastes the same. I’ve also lost my hair, because the medication basically has the same side effects as chemotherapy.

How does your skin condition affect your daily living and your family? Right now I see the doctor once every two weeks for follow-up. At the beginning it was two days a week.

People will look at me twice. For example, my nose is kind of flat and odd-looking because after the surgeries, I had two infections that destroyed all the cartilage and bones they had transplanted from my ribs. I also have scars all over my face, arms and legs. And right now, with the medication, I’m losing my hair.

This is really affecting my family more than me. I say to them and anyone else, “Okay, I’ve lost a nose. What’s hair?” But I’m really hoping the hair will grow back.

What can people with GS do to manage their condition from day to day? I’d recommend that people see their dermatologist regularly and have the lesions taken care of— sooner rather than later. The bigger the lesion is, the bigger the scar. People should also wear sunscreen all the time, in both summer and winter, and try to get involved in a clinical trial.

What sort of education have you received on dealing with your condition? Unfortunately, even today some doctors have no idea about Gorlin syndrome. But the BCCNS group has many useful resources. In addition, through its support group I have found out there are lots of people like me out there. The group’s motto is “You’re not alone.”

Is there any support you wish you had? I don’t know if it’s so much support that I’m missing, but more the knowing and understanding. I wish doctors knew more about GS—if there was greater information, additional sharing, if people knew about it, that would be great.

There is another excellent support group called AboutFace which is for those who have a facial difference and for the parents of children with facial differences. I’ve been part of it for 21 years, since my son was born.

I just want people with GS to know that they’re normal and they are not alone. There is help out there.

Both BCCNS and AboutFace are affiliate members of the CSPA.

 

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