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.
Getting your child to comply with wet wraps can feel like can be a battle! Which if you think about it, is a little ironic, because by administering wet wraps you are helping your child’s suit of armor, their skin defends itself against the outside world! So let us talk strategy, determine some “weapons” for your arsenal, and let’s realign so that you and your child can go from enemies to allies.
When we feel overwhelmed or stressed, it can be tempting to tell ourselves (or each other!) Just relax, calm down! When we are stressed or freaking out, that is easier said than done. That’s why preparing a “coping tool kit,” a set of strategies for dealing with stress can be really powerful.
Do you freak out when you break out? I know I have! It is natural when we have a break-out to look in the mirror and think things like “These pimples are gross!” “I hate my skin!” “Things are never going to get any better!” Even though it is natural we think this way, it is harmful too.
Stop picking, popping, poking your pimples!
I know, it’s sort of like eating the whole bag of potato chips…we all know we aren’t supposed to do it, and yet, the temptation is SO STRONG! So…how do you stop?
Start with choosing an alternative activity!
We had so much fun at our first annual Heart + Sole Walk and Back To School Family festival! We want to thank all of our sponsors and everyone who came out to support our mission to make the world a more kind and understanding place for those with skin conditions.
As a Child Life Specialist working with teens and kids who have special skin, there is one question I get A LOT. “How do I talk to my teenager, when they tell me they don’t like how they look?” Parents are so worried that they will say the “wrong thing.” And truthfully, I have spent …
We had an amazing time celebrating the launch of our brand new SKIN DISCOVERY BOXES, a very special collaboration with our friends at CeraVe! CeraVe’s tireless pursuit of therapeutic skincare for all is truly more than skin deep and we couldn’t be more thankful. We celebrated in style thanks to our friends at Star Cinema …
A Children’s House for the Soul believes that it takes a village to support a child and family impacted by skin disease and birthmarks and that we are all better together.
Open House and Ribbon Cutting/Bring A Children’s House Home: On June 5th we began a very exciting new chapter of our A Children’s House story in the form of opening up our new beautiful space to serve children and teenagers with skin conditions and birthmarks and their families. This space includes a salon, a library & craft space, a teen room, and more! We also debuted our incredible new custom mural from up and coming local artist Eli Pallaert.
Our Family Trivia night was oh so much fun, and a huge success! We had so much fun getting to reconnect with all our friends and enjoy some laughs while snacking out on pizza and snowcones!
In honor of Vascular Birthmark Awareness Month, our childlife specialist Lindsay O’Sullivan had a great conversation with Jose about growing up with his special masterpiece skin!
In this interview, Ally shares about her experiences growing up with Ichthyosis. Ally shares how: Meeting other kids with special skin can help kids to feel less isolated and give them a very special sense of comradery and understanding. Parents don’t have to do everything perfectly to be the perfect parent for their child and …
What a wonderful time to relax, enjoy friendly company, and share their hearts on being a mama to a kiddo or teen with special skin. It was truly so special! These mamas were made a masterpiece!
Vascular birthmarks are very common in children. These birthmarks are made of blood vessels in the skin and can occur anywhere on the body. They may be pink or red in color, blue or purplish, flat or raised. Since they are vascular, sometimes they will feel warm to touch and may change in color with …
We have some exciting updates about our Capital Campaign! Learn about our short and long term plans for our own space.
You Can’t Teach What Has No History “This is how much God loved the world: He gave his Son, his one and only Son. And this is why: so that no one need be destroyed; by believing in him, anyone can have a whole and lasting life. God didn’t go to all the trouble of …
In honor of Ectodermal Dysplasia Awareness month in February, we sat down with two of our dearest friends Zach and his mama Susan! Zach is an avid golfer, an Aggie, and is affected by Ectodermal Dysplasia. Susan and Zach teach us about ED and the importance of finding community. They also had helpful tips and …
Join us for a fun and inspiring interview with this incredible lady Ana Maria! Ana Maria Triana is 15 years old and the author of How to Conquer Alopecia Universalis. Ana Maria gives heartfelt advice, shares wisdom beyond her years, and will leave you feeling full of compassion and confidence. A Children’s House for the …
In honor of the upcoming National Epidermolysis Bullosa (EB) Awareness week, we wanted to share this great piece from our friend, Rachael Wrobel about how her mama mothered her well, even despite the challenges of EB.
I am fortunate enough to be Mama to three little girls. Shortly after my eldest daughter’s first birthday (about 4 years ago) I noticed her hair was thinning. I was told by many it was just typical baby hair loss until it just couldn’t be described at “typical” any longer.