This Is Not Some Hollywood Smile Issue

A Canadian mother trusted her instincts and had her son genetically tested when he didn’t develop all of his teeth. Their journey led to a diagnosis of odontoonychodermal dysplasia, a rare type of ectodermal dysplasia. It also explained symptoms for other family members. Read what Jamie Critchell is determined she must do now.

Mr. and Mrs. Weirdo and Goofball

Growing up affected by hypohidrotic ectodermal dysplasia, Everett Hamilton never dreamed he would marry or have kids. Then, Sarah asked him on a first date and all of that changed.

Adopting My Daughter With Goltz Syndrome

Choosing to adopt a child with a rare condition can be daunting. Caroline Ruhl has done it twice. Read about the journey that led her to adopting a spunky and beautiful child who happens to have Goltz syndrome.

Miss Wiggy

Hi, My name is Niamh and I’m 17, from West Yorkshire. I started wearing wigs when I was 16. I was born with a skin disorder called ectodermal dysplasia (Hay Wells syndrome) causing alopecia. I have two wigs currently. I cannot explain how amazing these wigs make me feel. They have boosted my confidence dramatically. I am…

How I Replaced the Lonely Feeling With Hope

Briana Pinon felt incredibly alone when her baby was diagnosed with ectodermal dysplasia. That all changed when she connected with the National Foundation for Ectodermal Dysplasias. This mom talks about finding resources, connecting with other families and teaching her son about his condition.

PROSE Lenses Give Super E the Ability to See

“Ethan has overcome everything that has happened. He has remained positive. – Natalie Kranig Ethan Kranig did not earn the nickname “Super E” for nothing. At nine years old, Ethan continues to prove time and again that he is a fighter in facing the many challenges of his ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome. Ethan’s positive attitude…

What better time to raise money for the NFED?

By Brian Brubaker   Overheating hasn’t been something that Kindergartner Emily Rose Brubaker has had to deal with very much so far growing up in Alaska. Normally in Alaska, hyp-O-thermia is much more common that hyp-ER-thermia. But in the middle of the Alaska winter, when the Iditarod sled dog race is about to start, the…

Cody’s Limitless Life

What have you let set you back today? This is a question that Cody Snell can answer with a smile. He has he never let anything including his x-linked hypohidrotic ectodermal dysplasia (XLHED) keep him from anything. That includes playing sports year round while growing up and working 10-hour days in 120 degree heat as…

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