Stephanie's Story Living with Vitiligo

This is a guest post from one of our board members Stephanie.

I am part of the 1% of the world’s population that has vitiligo.

I was diagnosed with vitiligo at the age of seven, and I am now thirty years old. Most of my life I have had vitiligo, which is a skin condition that causes a loss of pigment from areas of the skin, leaving white patches all over the skin. My body’s pigment-producing cells, melanocytes, have stopped making melanin–the pigment that gives us our skin, hair, and eye color. No one knows why this happens and there is no “cure” for it. Though vitiligo is not life-threatening it can be very, very debilitating.

We all experience insecurities. A lot of these insecurities we struggle with during our critical teen years (and sometimes even later into adulthood) may be physical, and my main thing has always been my skin. It’s on display for everyone to see.

I literally have two different colors on my body. People have asked me if I’ve been burned, or if I was in some sort of accident. They ask if I got tattooed, and they ask if it’s the same as “normal” skin. Sometimes people don’t ask at all and instead, they stare and treat you differently.

This type of behavior towards you plays a huge part in developing your self-esteem and doesn’t make growing up easy. Vitiligo has a huge emotional and psychological effect on you. If you don’t have the right support system or coping mechanisms, life can be hard. Seek out organizations like A Children’s House for the Soul and Houston Vitiligo Awareness Movement, whose mission is to support, encourage, and educate those affected by this autoimmune disease.

For me, embracing this rare skin condition has been a lifelong process. Acceptance of myself white patches, white hair and all, and building my self-confidence hasn’t always been easy. With the love and support from family and friends, though, I’ve gone from hiding myself to loving the skin I’m in. I have learned to appreciate the beauty of my white patches.

It’s important to accept and love yourself. Once you do, you will live in peace. Once I began to love the skin I’m in, I stressed less about what others saw. I realized that I was not alone in this: 50 million other people in the world live with vitiligo and we all can come together to lift each other up in strength.

I now wear shorts, tank tops, and bikinis – all while wearing SPF 100, of course! I truly believe people see the confidence I have in my skin. They compliment me and say how beautiful and cool my skin is! Moments like that are an opportunity to educate and teach them about vitiligo.

This is me.

This is what makes me unique and sets me apart from others. I am God’s masterpiece. There is no one like me. Vitiligo does not define me, but it makes me who I am, and I wouldn’t want my skin to look any other way. I own each patch on my body and choose to love it. I’m constantly building confidence and reminding myself that I am two shades of beautiful.

I hope we all can join in celebrating vitiligo awareness month to build global recognition about this condition.