Skin Diaries

Vitiligo Patient Loses 100% of Her Skin’s Pigment

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.

Rachael Laurin Photography

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.

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6 Comments

  • Sheetal

    This is exactly how my vitiligo is. Diagnosed at 7 and by the time I was 21, my skin turned pure white. It almost feels that because I no longer have 2 colours of skin, my vitiligo isn’t an issue. But it’s something I battle with almost every day.

  • Harsha

    Vitiligo is difficult to handle. Vitiligo has appeared to me at the age of 35, there’s small white patch near the mouth. I didn’t bother about them at that time. Then month by month white patches was increased. It totally occupies my whole body. I have undergone many treatments but, none helped me. Then, I heard about the coverup lotion for vitiligo. With the help of coverup lotion, I battled every day with vitiligo.

  • Karen L.

    I too have 100% coverage of vitiligo. Had a dark olive complexion, then when I was 26 – 28 I began to have the white spots, and in that 2 year period I was completely covered. Now 77 I have lived with it for most of my life. I do believe we are very lucky, even though a few years ago I also lost 100% of the hair on my body, Makeup and wigs and nobody bats an eye. Baffles me why I have long beautiful nails, nobody can answer me that. I do not let it stop me from living a normal life, nobody knows unless I tell them. Everybody knows, have to have a good sense of humour, do not let it control your life. Blessings..

  • Heng W

    Thanks for this post and for educating readers about Vitiligo! Never heard of this disease until today. Good job for sharing this

    • Lilly

      My vitiligo started when I was about 8 or 9 years old. Over the course of about 3 years it covered 98% of my body. I only have small brown patches on my knees and elbows. Sometimes i think it’s great that I have it all over my body, because when I was a teen I started self tanning and sometimes people can’t even tell that I have vitiligo because the self tan looks even. I looke like a regular person. That has helped to cope with it because we all know how harsh the society can be. The only thing I worry about is my children or future generations having it because I don’t want them to go through the same thing I went trough because it was hard and I had to battle mentally, I still do. I know it’s not the end of the world and I just have to live the happiest life I can live because there are way worse diseases and illnesses than vitiligo. I pray for all of you and I hope you all live a happy life.

  • Julie Simmons

    I also have vitiligo over 100% of my body. Mine started at 28 and it took almost 10 years for it to become completely non pigmented. I have found however that taking a good amount of the b complex vitamins, I will begin to have freckles on my forearm and shins. I stay covered in the sun, hat and gloves if I’m working outside. Sunscreen is a waist of time, it’s never strong enough. Im 51 now and life is good,

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