A Day in the Life: Living with Hypohidrotic Ectodermal Dysplasia

By Veronica Minard Meet, Quiel Barrameda, a 35-year-old man from the Philippines who was born with hypohidrotic ectodermal dysplasia (HED). HED is characterized by missing teeth; fine, sparse hair; and the reduced ability to sweat. For Quiel, this means the incurable condition of not having sweat glands. Imagine living in a climate, where the average…

A Wig Sister is Living Her Best Hair Life

Jessica Reece has always had super thin, fragile and unmanageable hair due to EEC syndrome. Find out how trying a wig has changed her life. Plus, learn Jessica’s best tips for purchasing, choosing, caring for and styling a wig.

Seeing Myself as Beautiful

Nicole Fitzgerald spent many years not feeling like a woman because of how ectodermal dysplasia affected her hair, teeth, skin and breasts. She found her path to feeling beautiful and wants to share that with other women.

The Most Beautiful Sight

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.

Free Ectodermal Dysplasia Webinars

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.

Marching On After Diagnosis

Jonathan Weil tells the story of how his family grew in strength and knowledge after his daughter, Maddie’s, diagnosis with ecodermal dysplasias. They’ve come a long way from feeling helpless.

Clouston Syndrome: Perfectly Different

Addison Kemper spent her life being told she’s perfect, but knowing she was different. She had little hair and problems with her nails. Kids bullied her. Life was hard at times. She knew she must have a condition of some kind but found no answers. Her baby’s arrival led her to a diagnosis for both: Clouston syndrome. Those two words opened the door a new world.