It was the perfect day to get married. The sun was bright, the weather was warm, and the beautiful valley stretched out around the field where the ceremony was taking place. Love was in the air and each moment of the ceremony was heartfelt and touching. Unfortunately, I missed most it. I was huddled under an oversized umbrella in the back row, trying not to burn in the sun as the couple said their “I do’s” – because skin without pigment can quickly turn pink.
I was seven years old when I was diagnosed with vitiligo. The little white spots on my spine seemed innocent enough, but the doctor had a different story. My mother was familiar with the disease – her mother, my grandmother, lived with vitiligo for most of her life. Still, she was devastated to hear the news, and worried about what this might mean for me.
Vitiligo is an autoimmune disease that causes loss of pigment, resulting in white spots on the skin and occasionally, loss of pigment in the hair too. About 1% of the world’s population (50 million people) has vitiligo and the condition affects all races and both sexes equally. Since the cause of vitiligo is unknown, there is no cure and treatments are often unpredictable and can vary in results.
It turns out, my vitiligo was aggressive. Although it started on my spine and knees, the spots quickly spread to the point that treatments were ineffective. We just couldn’t keep up with it, and I chose early on not to pursue treatment any further.
Growing up, it wasn’t unusual for me to have three colors of skin – tan, white and pink for my normal skin, my vitiligo and my burned vitiligo. In fact, this tri-color look earned me the nickname of Neapolitan in college. Staying sun-safe wasn’t necessarily hard – I just tended to forget.
Today, twenty years after my diagnosis, I’ve lost 100% of my skin’s pigment to vitiligo. With no color left in my skin, my complexion rivals that of Snow White’s – under my tanner, which I wear daily. As a result, protection from the sun is a requirement at this point in my life. Being exposed in the sun is just uncomfortable – in other words, I can’t forget.
Avoiding the sun is just another aspect of life I’ve learned to live with. I’m the girl who can’t go to the beach without an umbrella, and often a rash guard too. I’m the friend who makes the waiter switch our patio table to one with shade. I schedule my days around the sun’s rays and try to go outdoors in the early mornings or evenings after the sun begins to fade. I always ask about the shade situation for any outdoor activities – and excuse myself when appropriate.
Of course, I still get burned from time to time, despite my best efforts. That’s why I’m thankful for companies like Coolibar that not only provide education on sun safety but create real solutions to enjoying the sun without risking sunburn.
You can learn more about vitiligo and my journey at livingdappled.com, a lifestyle blog for girls and women with vitiligo.