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 hoping to meet a man who will want to see my spirit first and my skin second—which is how it should be in all relationships anyway, shouldn’t it?

Vitiligo is a very obvious condition. Have you ever been on the receiving end of comments? VH: Not to my face…although I know that people stare and wonder. Some may even choose to stay away. My attitude is that these markings are my “tats” and my exotica creature skin. HF: Yes, when out in public I see how people stare at me. Some have thought I had leprosy; I’ve been called a watermelon man and the polka-dot man.

What steps do you take to manage your condition? VH: I start with skin conditioning (creams and sun protection) and make-up (or not!), clothing styles that cover and have lately started with narrow-band light treatment therapy. Also important is to focus on inner peace, goal setting and gathering information and eating healthily. HF: I get light treatment three times a week with my dermatologist, which is making a big difference. I also keep heavy oil or lotion on my body and don’t stay long in the sun.

What resources are out there to help you? VH: The CSPA, the new skinergy.ca social networking site, of course my dermatologist, the internet and all those who fearlessly present information and options. We’re building a new vitiligo organization under the CSPA umbrella, which we hope will be a resource for all vitiligo patients very soon. HF: I pray for healing to God each day, take vitamins D and E and omega-3 AEP-400 and drink antioxidant juices.

What kinds of support do you wish were available? VH: Information on health avenues to explore and financial support systems in place that can make coping affordable for everyone with this condition. HF: All my main supports are in place; however, for others who have this skin disease, I would like more knowledge to get out there to let people know about this growing skin problem. As with cancer, we will not stop until solutions are available for all people suffering with this disease. I’m pleased to be a part of Vitiligo Canada.

For more information about vitiligo and to join an online social network for those who have vitiligo or other skin conditions, visit www.canadianskin.ca. and www.skinergy.ca

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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