Laura Reiser grew up watching her dad struggle with the heat since he couldn’t sweat due to x-linked hypohidrotic ectodermal dysplasia (XLHED). When she became pregnant with a boy who also had XLHED, she and her husband, Milo, decided to participate in research that would potentially restore their unborn son’s sweat glands. Learn how another NFED mom helped them decide to do it, how baby Bennett is doing and how it’s impacted his “Papa.”
Meet, Quiel Barrameda, a 35-year-old man from the Philippines who was born with hypohidrotic ectodermal dysplasia (HED). Learn how he stays cool and overcame major challenges with the love and support of his family.
If your baby has been diagnosed with ankyloblepharon-ectodermal defects-cleft lip and/or palate (AEC) syndrome or if you suspect he or she might be affected, you have come to the right place! Here are some key things to know and resources to help you care for your baby.
Keeping your body cool when your sweat glands are missing or don’t work can be a daily challenge. Our new library article explains all about sweat glands and how they work – or don’t. Learn about hypohidrosis, the signs of overheating and ways to stay cool. Families weigh in on what’s working for them.
The Stollers spent the first few years of their daughter, Kambree’s life, trying to figure out what was causing all of her different, possibly unrelated, symptoms. When Kambree was finally diagnosed with ectodermal dysplasia, professionals and genetic testing couldn’t pinpoint which type she might have. Until an NFED Family Conference changed their life. They found something they didn’t realize they were seeking.
Markus Kappen can’t sweat but hasn’t let that stop him from competing in triathlons. He says that you don’t choose your passion. Passion chooses you without you even noticing. In this inspirational story, he shares what he’s learned, the obstacles he overcame and what his next passion looks like.
We are excited to announce our webinar series for 2020: Conference from your Couch! Join us on the second Wednesday of every other month in 2020 at 7 p.m. central for FREE webinars to learn more about ectodermal dysplasias, symptoms, treatments and research.
Dr. Angus Clark is investigating a new, noninvasive way to diagnose x-linked hypohidrotic ectodermal dysplasia in utero. His findings could help facilitate the upcoming clinical trial for treatment. We are proud to fund this work.