It’s been a tough year in 5th grade for 10-year-old Josh. He’s been struggling internally about who he is and the condition he has, according to his mom, Chelsea Horan. Josh is affected by hypohidrotic ectodermal dysplasia, a rare genetic disorder.

“Josh has been struggling a bit this year with talking to his peers who are more social confident and ‘sporty’”, Chelsea said. “He said that a lot of the boys he was close with in younger grades are now in competitive sports leagues. They are more aggressive on the playing field at recess. He says he sometimes feels left behind by his friends and doesn’t know how to engage with some of them anymore. Josh has really started to feel the isolation of his difference internally. He says he’s well-liked by his peers and no one mistreats him, but that he often feels lonely being the only one with ectodermal dysplasia.”

Josh shows the poster he created to educate his classmates about ectodermal dysplasia.

But that recently changed. He and his classmates had to research a topic and educate the class about it. Josh stood in front of his classmates and gave a speech about ectodermal dysplasia.

“I was really nervous! I thought people might laugh or think it was lame.” – Josh

Watch Josh Shine

“This video is Josh giving his speech in class! It’s SOOOOOO worth watching. My brave, brave, sweet boy nailed it!” Chelsea gushed.

They definitely didn’t think it was lame. Instead, his peers were all very kind and encouraging, his mom said. Josh said the kids all paid close attention to him and were all glad to hear about him.

“He was on cloud 9 after his presentation!” Chelsea said. “He realized he has the power to educate people and remove the ‘stigma’ of differences just by talking and being open about himself!”

Chelsea has always openly discussed ectodermal dysplasia with the other parents and the school. But, this was the first time that Josh took charge of the education.

They were all smiling at me. I felt GREAT! I think it helped me a TON. It felt really good to let it out and speak to my class so everyone is aware of what my condition really is and so no one will be afraid of me! – Josh

Learning What To Say

What do you say if you are a kid who has a rare disorder with a really hard name to pronounce?

Most students are uncertain about what to say to their peers about the fact they are affected by ectodermal dysplasia. They may be nervous about how it would impact their friendships and relationships with classmates.

“Like most of us, Josh does not enjoy public speaking!” Chelsea said. “He started showing some real signs of anxiety over it in and even made himself sick with worry a few times. Knowing how personal this topic was for Josh did make me a little nervous, but I could tell he was determined to be successful. I knew he would do well. However, when I actually watched the video of him giving his speech, I filled with so much pride and joy at how well he did!”

If you are worried, you are not alone. Check out our new library resource on developing a plan for how to talk to your friends and classmates.

Hand Them Your Card

How you tell your peers might change as you enter junior high or high school. You may not want to share how you did when you were younger. Or, you may want to explain in a different way. And that’s ok.

Some tweens and teens have handed out a small card with information about ectodermal dysplasia that the NFED can provide.

Karynlee Berstecher said her now adult son, Adam, created such a card in middle school.

We took bullet points off the NFED web site and added the NFED link. The cool thing about the card is that it took the social awkwardness out of the situation and opened up conversation. It was great! – Karen


Gina Quintanar said handing out a card was the perfect for her son, Alex, when he was a shy first grader.

“We made a card that said, ‘I don’t sweat the small stuff. In fact, I don’t sweat at all.’ It also had a link to the NFED. He handed it out at school and out of school. It was something that gave him power if a child – or an adult – was staring at him.”

Gina said she also gave the cards to teachers and principals. She put her phone number on the card in case they ever needed to reach her.

It’s Your Story

As you can see, there are lots of ways to tell your peers about ectodermal dysplasia. It’s important to figure out what is best for you. We know one thing for sure. The story is yours to tell. And it’s a powerful one. It’s up to you for how, if and when to tell it!

Chelsea knows first hand the Josh benefited from telling his story.

“Not only did he choose a topic that is near and dear to our hearts, but he did so in an effort to bring awareness to his classmates about what makes him unique and special. He displayed such confidence in his delivery and mannerisms that I almost forgot about the struggles he once had. I’m so proud of Josh and I really can’t wait to see what he will accomplish in his life!”

18 comments on “Finding Power in Telling Your Classmates About Ectodermal Dysplasias”

  1. 1
    Rebeca Taylor on March 15, 2017

    Hi! Wow I’m so impressed! Josh is so brave. My grandson has ED, it looks like the same kind. He’s only 7 and will be starting school soon. I would love to talk to you!

    1. 2
      Chelsea Horan on March 15, 2017

      Hi Rebecca, Thank you so much for your comment! We are very proud of our son! We’d love to chat with you and your grandson about XLHED and how we’ve navigated his condition through grammar school and beyond. Please let me know how to contact your family so we can stay in touch !

    2. 3
      Rebeca Taylor on March 16, 2017

      Hi Chelsie! I’m excited to communicate with you too. Here is my email

    3. 4
      Rebeca Taylor on March 16, 2017

      Hi Chelsea my email does not have the brackets. Please try without the brackets Rebeca

    4. 5
      Chelsea on March 17, 2017

      Hi Rebeca. Thank you for the details of your email ! We will reach out this weekend and are so looking forward to getting to know you and your family !

  2. 6
    Debbie Pyle on March 15, 2017

    Thank you for sharing this! It made me very proud of your little man. I have a grandson that we think has this condition but he’s only 2mo old. We’ll be having genetic testing in June. I will remember this video for my grandson’s​ future. I want him to have a full life.

    1. 7
      Chelsea Horan on March 15, 2017

      Hi Debbie
      Please know your grandson WILL live a full life ! Confidence, Education and Advocacy are key. We’d be happy to chat with your family at anytime. My brother and my son are both affected with XLHED so we have a unique vantage point into this condition!! Please let us know if we can be of service.

  3. 8
    Kelly on March 16, 2017

    Sooooo proud of you Josh! You are the light in our lives and we love you so very much! You make the world a brighter place.
    ❤️ Auntie Kelly

    1. 9
      Chelsea on March 17, 2017

      Thank you auntie Kelly !! You’re words and love mean so much to us !!! Xoxo

  4. 10
    Tracy Beals on March 16, 2017

    This touched me so much ❤❤❤ my daughter who is two was just diagnosed yesterday! I would love to chat!!!!

    1. 11
      Chelsea on March 17, 2017

      Hi Tracy. I’d love you chat with you ! I will reach out to you this weekend and set a time to talk! I do hope a diagnosis brings you a little clarity, even if it’s not exactly the words you were expectign to hear !

  5. 12
    Kris on March 18, 2017

    Josh, I am so very beyond proud of you! You have grown so much since preschool and changed in so many wonderful ways. By sharing your story with everyone you are educating them in a way that will help them the rest of their lives to have empathy and to model courage and how to move through your fears. Someday they will all have challenges and they will remember their friend Josh and how you handled yours. I am also so impressed with your classmates who gave you such positive feedback. You all must have a great teacher! Hugs to you and to you too Chelsea. You have been such a fantastic mom! Hugs to you all ❤❤❤

    1. 13
      Chelsea on March 18, 2017

      Thank you Kris ! It seems like a million years ago, yet just yesterday, that Josh was at Trinity with you ! Josh has changed so much over the years, this year being the biggest yet. We are about to enter the middle school years and I think we all remember how difficult those years were ! He is a brave and resilient child with such a loving heart- so I know he will be just fine ! But as you know, education is the key to removing the labes and barriers that society attaches to us ! Josh has learned just how powerful his voice really is when passionately convicted about something ! His Amazing teacher, Mrs Nelson, really encouraged him to have a Growth Mindset and write this speech from the heart! We couldn’t be more proud of Josh’s bravery !!!

  6. 14
    Shelly on March 18, 2017

    Brought tears to my eyes. I’m filled with gratitude that we have a teacher who helps all our kids on every level. Thank you Mrs. Nelson! I’m sharing on my Facebook ?

  7. 15
    Heidi on April 10, 2017

    I’m so proud of you Josh!!! You rock! ;o) You are going to help so many people!
    Mrs. Smutny
    (Josh’s 4th Grade Teacher)

  8. 16
    Sally Comstock on January 10, 2018

    My grandson who is two has the same diagnosis. One of the main problems we face living in the South is the heat . Has anyone had much success in cooling vests or other methods that have been helpful with this problem ?Many of the vests seem heavy and bulky . Thank you for this article the information will be very helpful when he starts school.

    1. 17
      Jodi Edgar Reinhardt on January 15, 2018

      Hi, Sally. You will find our Cooling Guide helpful in giving you ideas for how to stay cool when you can’t sweat. You can access it at We have heard from most of our adults who don’t sweat that water is the best way stay cool. Soaking your shirt, hat or bandana or using a spray mister is the best way to stay cool. But, you will find many other tips in the guide. Good luck and call our NFED office at 618-566-2020 if you still need ideas. We are here to help, supporting you, supporting each other. ~ Jodi, NFED, Director, Marketing and Communications

  9. 18
    Rosemarie Brenner on August 5, 2018

    Wow! You did a wonderful job with your presentation, Josh! My son was born with XLHED, and has navigated many of the same challenges that you mentioned in your presentation; he’s 32 years old now, and is doing well. Focus on what you CAN do, and I know you will meet whatever goals you set for yourself- you’ve already proven you have what it takes with this wonderful and educational presentation! Kudos 🙂

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