Maarten and Linus were the first two boys treated before they were born with an investigational medicine for X-linked hypohidrotic ectodermal dysplasia. The boys are now 7 years old. The long-term results are incredibly positive! Read how they and the four other boys who were treated are doing.
How I Finally Made Peace With My Hair
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.
Caring for Our HED Baby Down Under
Our story of parenting our son, Ruben, during his first year is one of instinct and intuition, as we didn’t know until 16 months that Ruben’s collection of features amounted to something called hypohidrotic ectodermal dysplasia (HED). There’s no known ectodermal dysplasia in our families. We’d been asking all the right questions about our fluffy-haired, dry-skinned, hot-bodied babe, but it wasn’t until I mentioned our son’s toothlessness to his older brother’s dentist, that an answer was offered.
How I Diagnosed Myself With a Rare Disorder
Erica Green is a young woman who spent her life without a name or explanation as to why her teeth were missing and different. Because she presented “normally,” no doctor or dentist ever had answers or a name. Then, she broke her denture and sent her on a journey to self-diagnosis.
Our Baby Struggled to Swallow
Baby Oakley had a hard time feeding. Watching your baby not be able to swallow can be terrifying. He had projectile vomiting and wasn’t gaining weight. His parents begged doctors to help their baby boy. A hospital stay and many tests later, they figured it out. This information coupled with a trip to the dentist led to a diagnosis of ectodermal dysplasias. Find out how Oakley is feeding now.
Aubrey’s Story
Aubrey Stratz is your typical four-year-old girl who loves dancing, unicorns and dressing up as a princess. She’s happy and healthy. She adores her big brother, Max. What’s not typical about Miss Aubrey is the rare condition that affects her, hypohidrotic ectodermal dysplasia. What’s even more interesting is that her her dad was diagnosed, too, but has no symptoms.
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.