We are so thankful to Megan for sharing her story with us for Alopecia Awareness month!
Hello, my name is Megan and I have alopecia. It is alopecia awareness month and I would like to share my story. The basic description of alopecia is that hair falls out in patches, or total loss of hair on the scalp or the body. Alopecia is different for everyone, and for me, I went through different stages.
When I was around 10/11 I was diagnosed with alopecia. My hair had fallen out in patches and went through the traditional cortisone shots. However, these were quite painful for me, so I started to go to a dermatologist that began a newer treatment called squaric acid. This truly was painful as well but after a few months, I began to see results. My hair started to grow back, and I had all my hair again. However, it did not last forever. I went through another season of alopecia when I was about 13. Once again when I was 14 going on 15, my hair started to fall out more rapidly than anytime before. I tried doing squaric acid treatments again, but my hair was falling out too rapidly. Honestly, it was a very hard time for me, and I decided to stop treatments, and accept the fact that I was going to be bald. This time my hair was completely gone, no eyebrows, no eyelashes, nothing! As a freshman in high school, I truly felt embarrassed and not myself. I felt the pressure of putting on a strong face, but it was hard. It wasn’t until I had the opportunity to go to a camp for kids with skin conditions that I finally started to gain more confidence.
Camp Discovery is hosted every summer by the American Academy of Dermatology, and they allow children with skin conditions to go to camp completely free of costs. This camp was a true turning point in my confidence, and help me see that there are other people like me. The next major turning point for me was when I attended the “Love the Skin You’re In” event hosted by A Children’s House for the Soul. This event was fantastic, and such an amazing experience. A photographer named Rick Guidotti, who is such an amazing soul, and positive person to be around, made me feel so beautiful and was super affirming when taking photographs of me. These events helped me become more confident, and I began to embrace my baldness, not just accept it. My hair did not make me who I was.
As of late 2017, my hair started to grow back and my hair grew back by my 18th birthday. I will not lie, and say that I was not excited to have my hair back, but I knew that it was possible that I could lose it again. As of September 2019, I am starting to see patches appear, and my hair is slowly falling out in clumps again. However, I am choosing to not let my hair loss prevent my confidence. I am currently a university student at UTSA (Go ‘Runners), and I am microbiology major. I am in my second year and I absolutely love it. I also, recently dyed my hair purple, and it looks very cool.
My experience with alopecia is unique to me and I can not speak for everyone, however I would love to raise more awareness about this disease. If you are diagnosed with alopecia, please do not let the disease control you. You are not your hair, and you are wonderfully you. If your child, or someone you know is diagnosed with alopecia, please help them on their confidence journey, because it is a tough road and an ongoing experience. Be there for them, and listen.
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.