Suzanne Brown ignored her painful eyes for years, always thinking, “I’m fine.” But she wasn’t fine. In 2017, she noticed that she was going to bed earlier in the evening because “my eyes were done.” Affected by ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome, Suzanne found a treatment that changed her life.
We want to thank you.
In recent years, there has been a growing trend to create a “Gratitude Jar” as a visual reminder of the wonderful things in our lives. Every day (or as often as possible), you put in a note about something that happened that day that gives you gratitude and thanks. At the end of the year,…
Our Hero, Every Day
Finally getting a diagnosis of hypohidrotic ectodermal dysplasia for their 13-month-old daughter was a relief for Sam and Neil Gansebom. But, they still had all of these emotions. Where would they turn? What should they do? Read about how they are coping and what they are doing.
First Dentures for Hazel: Her Mom’s Perspective
Watching your baby girl – who is only 5 – get fitted for her first pair of dentures can be an emotional journey. Read how Sarah Hamilton is navigating the process and find out what she’s learned about her daughter, herself and ectodermal dysplasia.
Fighting for Future Generations of My Family
Dylan Steyer is a three-year-old boy who simply wants to have teeth. He’s even asked his mom if he can have hers. Dylan only has 5 teeth due to hypohidrotic ectodermal dysplasia. Learn what his mom, Laura is doing to fight for his right to dental care.
Ultrasound-Based Diagnosis of X-Linked Hypohidrotic Ectodermal Dysplasia In Mid-Pregnancy
Researchers identified a way to diagnose x-linked hypohidrotic ectodermal dysplasia noninvasively. Learn how and why it’s imporant for a new potential treatment.
Our Family’s Life-Changing Day
X-rays showed that he would have no teeth at all on the bottom front, and very few elsewhere. How could that be? Read how the Williams family found a diagnosis and a new family.
Children Don’t Need Teeth?
Kevin Koser doesn’t think he should have to explain to his son with ectodermal dysplasia that he can’t have teeth because health insurance companies don’t feel teeth are necessary. So, he’s taking action and getting others to join him in advocating for the Ensuring Lasting Smiles Act.