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.
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.
After the last several months of this pandemic, I think we are all well-versed in how important it is to wash our hands so that we don’t spread germs. But with all this hand washing and sanitizing, dry skin, eczema breakouts, and contact dermatitis have become even more troublesome. What can we do about it?
Join us for a quick and very insightful video interview with Dr. Alana Kennedy-Nasser as she shares with us how to keep kids safe as they go back to school in-person and how to keep kids developmentally “on track” as they attend school virtually.
What questions do you have for back to school content experts? Read on for some brilliant questions and answers from this super smart teacher mama, Lacy Cunningham, M.A.Ed.
Online learning can be a fun experience filled with lots of great experiences; but as humans, we were meant to interact with one another and have companionship. How can we develop ways to ensure kids stay engaged while learning in a different setting?
This year, the normal first day of school jitters will likely be accompanied by some new concerns that we have not encountered before. Lindsey O’Sullivan, Child Life Specialist, provides guidance on how to navigate these conversations with your child.
As we prepare for school to begin, those of us that are sending our kiddos slowly back out into the world may find ourselves explaining what has changed (again) in the last few months. Dr. Chad Brandt, a therapist who specializes in anxiety in children and teens, offers us a few guideposts for talking about the coronavirus with children.
Validation means to acknowledge and sometimes normalize someone’s feelings or reactions to a specific scenario. Validation continues the conversation, creates trust, and helps children communicate their truest feelings with the adults around them.