Today we are featuring a guest post from one of our amazing friends Ally. Ally has epidermolytic ichthyosis (formerly known as epidermolytic hyperkeratosis). It is a rare genetic condition that causes the skin to be diffusely red with an increased risk of skin infections.
So it happened…you notice someone looking at you or your child. Maybe it’s not even just a passing glance but a full on stare. Maybe it is accompanied with a confused look or worse…an inappropriate comment.
It has definitely happened to me and my first instinct is to say, “Hey! Wanna take a picture it’ll last longer!” Or I get my feelings hurt, hang my head down low and cover up my hands and arms. Neither of these approaches makes me feel better or improves the situation. To be honest, I have spent most of my life ignoring the comments and stares, but I have found that it is better to speak up. Speaking up helps that person learn something new and hopefully the next time he or she sees someone with something different about them, they will react a bit better. So here are my favorite ways to address these situations:
1. “I have a skin condition and don’t worry I’m not contagious and it doesn’t hurt me.” I used this line when I’m not feeling up to a conversation. 99.9% of the time when people see me they think I have a painful sunburn or I have something contagious. This way I answer what probably is their question, and I address the situation without having to explain much more.
2. “I’m a mutant like X-Men.” I usually say this if someone has asked me something along the lines of “What is that?” I believe humor belongs in almost everything and this line usually brings a smile to the person’s face. And once that happens. It brings their guard down and allows us to have a conversation about my skin condition.
3. “Did you know you are looking at a unicorn!” This is probably my favorite line because it totally catches people off guard. But the truth is they are seeing something out of the norm…and that’s really cool! And again, a lowered guard allows for more meaningful questions that gives way to education. Which I think is the key, being open enough to educate others by letting them ask question.
It may be difficult at first to address staring, questions, or insensitive comments head-on. But the more you do, the better you will get at it and amazingly the better you will feel about yourself. Because you have just become your own advocate and gained a superpower!!
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.
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?