From Fragile to Thriving: The First 15 Years of Living with AEC Syndrome

Joshua has endured 51 surgeries, life-threatening skin infections, overheating challenges and ever weeping eyes. His mom looks back on his childhood and journals about the medical issues Joshua faced and how they treated them. Read how this teenager is embracing life as an adventure and educating others about having AEC syndrome.

Finding Success in the Water, in Law and in Love

Lawrence Dillon read John Baker’s ectodermal dysplasia story and discovered they had similar journeys. The champion swimmer and attorney talks about how he, too, has successfully navigated a lifetime of “being different” by facing it head on.

Choose Positivity and Live the Life You Want

When John was born in the 1950s with HED, he spent most of his toddler years indoors, on doctor’s advice. Then his family’s minister said something to his parents that changed his life forever. The retired U.S. Navy Federal Service employee looks back on growing up with HED and the philosophy that spurred his success. He also shares his best tips for dealing with the heat when you can’t sweat.

I Learned Our Difference Makes Us One of a Kind

Lexie never wanted her friends to know she had ectodermal dysplasia. She desperately wanted to fit in and was willing to do anything to appear more like them. Now in her 20s, she shares how she overcame her shame and has embraced her uniqueness.

My Motto: Never Ever Give Up

Meet Nicole, a determined 14-year-old girl who is using her voice on Capitol Hill to advocate for herself and others. She would like you to join her. Learn why she’s advocating and what you can do to help.

A Seventh Grader’s Tips for a Great School Year

Laurel is a 12-year-old girl with ectodermal dysplasia who wants to share her school experience with other affected kids. Learn what she has to say about teaching teachers, having an IEP, managing PE and handling bullies.

What I Would Tell My Middle School Self

For her entire life, dentists told Finlay she would have to wait till adulthood to get treatment for her missing teeth. They didn’t seem to understand how having missing and misshapen teeth was affecting her. Find out what her frustrated parents did to get her treatment and how this experience has impacted the teenager’s outlook.