Samantha’s story: Living with linear scleroderma


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 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.

 

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