Interviewed by CSPA Board member Preet Bhogal
Please tell us about yourself and where you live. My name is Samantha Loucks. I’m 23 years old and I live in Ajax, Ontario. I love music, reading, movies, cooking and spending time with family, friends and my boyfriend. I’m currently saving up to attend a postsecondary institution in the future. Life is pretty good!
How long have you had linear scleroderma? I was diagnosed with linear scleroderma when I was 11 years old.
How does it affect your daily life? When I was first diagnosed I had very low self-esteem. I was a very shy child, but once in high school I decided to become very outgoing so that people noticed my personality instead of my face. Now, it hardly affects my life all. People might stare, but I rarely notice. The biggest challenge is in job interviews. Some employers have judged me based on my facial differences.
How does it affect your personal relationships? It’s the elephant in the room. Once my linear scleroderma is addressed and dealt with, we can move on and get to know each other. My boyfriend doesn’t notice anymore, nor do my friends. When you stop focusing on your own differences, I believe others focus on them less, too.
What kind of education have you received on effective management? When I was first diagnosed, there weren’t many resources for skin patients. I suffered very severe depression, and finally sought help shortly before I turned 21. I have learned three lessons. First, pain is subjective. Second, we are in charge of our own emotions; no one can “make” me feel anything unless I give them permission. The third lesson: To laugh as much as possible. It can be so healing.
What steps do you take to manage your condition? When I was first diagnosed I was given a topical steroid cream to slow the disease. Unfortunately, it didn’t work for me. All I could do was wait for the disease to run its course. It destroyed all the fat, tissue and muscle in the right side of my face. I underwent a total of 13 surgeries, including several dental surgeries as my condition greatly affected my teeth. The difference these surgeries have made to my appearance is amazing. Other than that, discovering and joining AboutFace (www.aboutface.ca) was an amazing experience. It was the first time I had met people with facial differences and could walk into a room full of strangers and not feel judgment. Through my work with AboutFace, I’ve been able spread awareness not only about my condition, but about others with a facial difference.
What kinds of support help you most? My psychologist, friends, family and boyfriend make one powerful support system. They all love me and are always there to listen on those “bad days.” In addition, they don’t tolerate strangers staring at me or saying anything rude!
What kinds of support do you wish you had that you don’t? I have all the support I need; however, I do wish the general population would try to better understand those who appear different, whether because of a skin affliction or something else. Anyone with a visible difference is a person, too. We have feelings, thoughts, hopes, fears and dreams. And no one enjoys being stared at or judged.
One final question: What message would you like to communicate to all skin patients? If you suffer from a skin affliction, please remember this: If you are having a hard time coping, there is no shame in asking for help. You’re beautiful, smart and capable of everything that someone without a skin affliction can do.
The CSPA is a not-for-profit organization, created by patients for patients, providing support and information regarding skin, hair and nail conditions. Working with other members of the dermatological community, the CSPA raises awareness of the challenges of living with a skin conditions and encourages patients to self-advocate for their overall wellbeing.
- More CSPA Stories
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 Read More…
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 Read More…
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 Read More…
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 Read More…
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 Read More…
Meet Samantha, a 23-year-old who is hoping to attend university. Samantha lives with linear scleroderma, an auto-immune disorder that features a line of thickened skin. Interviewed by CSPA Board member Preet Bhogal Please tell us about yourself and where you live. My name is Samantha Loucks. I’m 23 years old and I live in Ajax, Ontario. I love music, reading, movies, cooking and spending time with family, friends and my boyfriend. I’m currently saving up to attend a postsecondary institution in the future. Life is pretty good! How long have you had linear scleroderma? I was diagnosed Read More…
Popular radio morning-show host Terry DiMonte sat down with Canadian Skin correspondent Preet Bhogal to talk about being in the public eye while dealing with psoriasis. By Preet Bhogal Terry DiMonte is glad he works in radio because there have been days when his psoriasis was so severe and wearing clothes was so painful that he did his show in his boxers. Terry’s story is like that of many other psoriasis patients—only in his case, Terry couldn’t always hide behind the microphone. “My whole thing was complicated by the fact that I was in the public eye in Read More…
By Preet Bhogal I went through a lot of versions of this piece. I narrated it, wrote it longhand, typed it on my laptop, even jotted down notes on my phone but nothing felt right. I thought of how I wanted to say it then questioned myself and started over completely. I took a lot of breaks to check Facebook, the latest celebrity gossip, and watch reruns of the Simpsons. I even took a break from taking a break to read up on the psychology of procrastination. During this whole process all I really learned were trivialities about Facebook friends Read More…