Paule Laflamme’s Story: Living with Gorlin syndrome

Posted on by Canadian Skin Patient Alliance

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

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Judith’s Story: Living with Eczema

Posted on by Canadian Skin Patient Alliance

Meet Judith. She’s an 18-year-old woman living in Laval, Quebec. She has been living with eczema for as long as she can remember.

Interviewed by Preet Bhogal

How does eczema affect your daily living? Your family? I choose my clothes according to how bad my skin looks in order to hide the eczema. I gave up sleepovers because my skin didn’t take them well. When my skin flares, I don’t sleep well and I get in a bad mood. During these times, I don’t want to move and I just want to stay at home. I also try to stay away from alcohol, but it can be hard sometimes. My condition doesn’t really affect my family but, when I was young, my mother often needed to apply creams for me. Even today, she is the one who cuts my nails to prevent damage.

What do you like to do for fun and relaxation? Does your skin condition affect your choices? I love being at the computer, watching movies and shopping. I never liked sports because sweat makes me want to scratch myself even more. My dermatologist suggested that I try yoga for relaxation, but I haven’t tried it yet.

What triggers flares? As soon as I am stressed, my skin flares. If it’s too dry or too humid, too cold or too hot, my skin is affected a lot. Sometimes I [...] continue the story

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Richard’s Story: Living with CTCL

Posted on by Canadian Skin Patient Alliance

Meet Richard. Six years ago he was diagnosed with cutaneous T-cell lymphoma (CTCL), a rare condition in which malfunctioning T cells result in uncontrolled skin growth that appears as patches of red scales or thickened plaques. It sometimes involves tumour growth and can involve the lymph nodes and internal organs if it reaches an advanced stage.

Interviewed by CSPA Board member Preet Bhogal

Tell us about yourself and where you live. I’m 40 years old and live in Toronto. I work in the finance industry and have a wife and three kids.

How long have you been a CTCL patient? I was diagnosed about six years ago, but probably had the condition for three or four years before being diagnosed.

How does it affect your daily living? It doesn’t affect my daily living significantly. I get occasional rashes; I use creams I get from the doctor. At one point I went for light treatment three times a week for a half hour— that was a bit of a hassle, but not really a big impact.

How does CTCL affect your personal relationships? At first there was a high stress level around the initial diagnosis because of the shock of a cancer diagnosis, but now that we know more about it the stress level is much lower. It is more of a chronic condition that needs to be managed.

Have you ever [...] continue the story

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Don’s Story: Living with burns

Posted on by Canadian Skin Patient Alliance

Meet Don Adamson. He’s 60 years old and lives in Alberta with his son. He was badly burned in a car fire and is now active in the burn survivor community.

Interviewed by CSPA Board member Preet Bhogal

Tell us a bit about your background as a burn survivor. I’ve worked in the aircraft industry as an avionics maintenance engineer for 38 years. In this business, fire safety is at the top of everyone’s mind and I have always been extremely safety conscious. Ironically, one night when I was on the way home my gas tank exploded and I got caught in a car fire.

Fortunately I don’t remember much about the fire. Over 50 per cent of my body was burned to the third degree and my lungs were badly compromised. I was in an induced coma for 20-plus days while the medical staff did their best to keep me alive. After waking up, I spent another three months in hospital undergoing skin grafts and physiotherapy. Once at home, over the next 18 months, I underwent several operations and more physical and occupational therapy.

How’s life these days? Through first-class care and therapy and lots of hard work I have returned to some normalcy of living. I have been able to return to work and am very active within the burn community. I have attended at least five burn conferences in Canada and the [...] continue the story

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Virginia and Horace’s Story: Living with Vitiligo

Posted on by Canadian Skin Patient Alliance

Meet Virginia H. and Horace F. as they discuss the daily (and different) challenges they face with vitiligo—a condition in which patches of skin turn white.

Interviewed by CSPA Board Member, Preet Bhogal

Tell us bit about yourselves. Virginia H.: I’m a “Winnipeg-ger” Canadian, Australian born. I’m a dance choreographer/visualartist with a musical background and a writer. I have Scottish, Maori, American and Irish roots. I have a beautiful daughter and an epic son. I’ve had vitiligo for five years.

Horace F.: I’m an American from Atlanta, Georgia. I’m an ordained minister, sales manager, health-care recruiter and director of my own consulting group in Vancouver, BC. My journey with vitiligo started in 2004.

How does vitiligo affect you? VH: My “attitude is my altitude.” I need to take into account things others don’t. This affects the clothes I wear, how I spend my money and even budgeting extra time and money for protective clothing styles and skin maintenance lotions and makeup. I really have to focus on make-up application and visual presentation in my daily life. HF: I have concern that people that I come into contact with sometimes draw away in fear that it’s contagious. Sometimes, when reaching out to hold or shake someone’s hand the look on their face is so depressing. My family was okay with it once they knew it is not contagious. VH: I’m 49 and single. My children see me as I am—their mom. I’m [...] continue the story

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