Speaking Up About Vitiligo
Helping people with sun sensitivities live their lives to the fullest, and giving everyone the ability to go into the sun with confidence, is exactly why UV Skinz creates UPF 50+ clothing. We love that we can be a part of this brave young’s man ability to enjoy a sun-safe life, and we love even more that he shared his story with us.
What type of skin condition do you have?
I have vitiligo (pronounced vit-ill-EYE-go) an autoimmune disease that causes one’s skin and hair to stop producing pigment and turn bleach white. Although it does not cause physical handicaps, it changes the perception in which others judge you and may weigh heavily on the human psyche. Less than one percent of the world has vitiligo.
I have been treated by five dermatologists since I was first diagnosed at age thirteen, five years ago. I have been told by all of my dermatologists that vitiligo is unpredictable and there is no cure. My early experiences with vitiligo were frustrating and upsetting. Some mornings I would wake up and have new spots or spots had grown for no apparent reason. I had white patches on my face that looked like an acid burn- combined with acne and entering high school, this was a less than ideal situation.
Since there is no cure, I have tried various steroid based creams and homeopathic treatments, including zinc, copper, magnesium, and gingko balboa. The only successful course of action has been a strong steroid cream applied to the vitiligo as soon as it starts.
What organizations were the most helpful to you?
Since there is no known cure and limited information, I resorted to various websites to learn about vitiligo. Most of the information was either in highly specialized scientific lingo, or merely speculation. So, I created my own blog Conquer Vitiligo to offer easily comprehensible information and first hand experience to anybody searching for vitiligo information. I hope to provide support to others with vitiligo because I know from personal experience that vitiligans can feel alone.
What would you say has been an impactful experience from your treatment?
The most impactful experience from my treatment is being told that there is no cure and no proven universal reason for what causes vitiligo. As a result, I have begun my own vitiligo research to determine the affect vitiligo has on the quality of life. Ultimately, I hope to determine if vitiligo should be considered a disability by the Canadian and American governments on the grounds of discrimination in the workplace.
What would you most like people to know about you and your family?
I want others to know that vitiligo does not shape my life- nor my family’s. Although I have to be careful in the sun and wear a plethora of sunscreen, I do not let vitiligo change the way I act or the activities in which I participate.
What is your greatest source of strength and/or inspiration?
I always consider those with worse vitiligo than I. Although my vitiligo is noticeable and receives a fair share of stares and questions, it is still manageable, so I try to do everything I can to minimize its affect on my life and help others with their battle against vitiligo.
How did this diagnosis change your life?
When I was first diagnosed at age thirteen, I had a couple spots on the left side of my face and a clump of grey eyebrows. I did not know how to handle the stares and questions about what was on my face. I became more quiet and reserved. It made it more difficult for me to meet new people and even participate in class. At age sixteen I moved away from my home in Canada to attend Choate Rosemary Hall, a boarding school in Connecticut. After my first season with my new hockey team, the captain’s gifts were t-shirts that were about each player’s personality. Mine said, “He Speaks.” At that point I made a conscientious effort to return to my friendly and easy-going self. Two years later, I am honored to serve as team captain.
I also avoided the sun as much as possible for fear that the sun would immediately make my vitiligo worse. This was not much of a problem during the school year, which was often spent in a hockey rink, but I avoided many outdoor activities during the summer. I feel badly that the summer’s of 2014 and 2015, my sister avoided sun activities on my account. In summers before my diagnosis we enjoyed swimming, fishing and kayaking together.
I was happy to spend more time outside with my sister this past summer; I developed a new spot as a result, but I have kept it under control with prompt treatment.
What challenges will you face going forward?
The unpredictability of vitiligo makes it difficult to assess what challenges I will have with vitiligo in the future. Since my vitiligo is on my face and hair, I hope that my visual abnormalities do not affect my ability to obtain employment. I hope to raise more awareness about vitiligo so that others do not have to deal with a stigma against vitiligo.
Is there an inspirational quote or song that keeps you moving forward and gives you strength in your life? (that you would like to share with our readers?)
“All Smiles.” Remind yourself of the great things in life and the opportunity that you have. Everyone is dealt different cards in life; character is determined by what you make of it.
It seems as if you would have to be very careful of the sun and of receiving sunburns – what is the best advice you can give to others to protect themselves from the dangers of the sun?
Always wear sunscreen when you are outside- even when it is cold and cloudy. In addition to sunscreen, I started wearing UV Skinz clothing to prevent my arms and legs from excessive sun exposure; it is important to protect all parts of the body from the sun. Style points as well for UV Skinz!
For more information on vitiligo please visit the National Institutes of Health website.
Read Craig’s blog Conquer Vitilego to follow him on his journey.