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.
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.
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.
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.
Soren Roe used to hide the fact that he’s missing teeth. Now, he uses it as an opening line when he meets new people. Read how this 24-year-old has faced his fears and realized how ectodermal dysplasia has shaped his life.
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.
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.
Tina Moss shares her 61-year journey to finally make peace with her sparse hair. Affected by hypohidrotic ectodermal dysplasia, she explores wearing wigs and discovers more of herself in the process. You can also download our new Sparse and Brittle Hair Guide to get answers, product suggestions, and prevention tips from our dermatologists.