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.

The Road Less Traveled

Priscilla and Ryan’s newborn baby struggled to feed in the neonatal intensive care unit. He just wouldn’t take a bottle and the family was frantic for answers as to why. The solution and ultimately an ectodermal dysplasia diagnosis came from their nurse, whose expertise was learned first-hand.

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.

We Should Love Our Lives

Cyprian Katongo grew up in Zambia being bullied and dissed for having hypohidrotic ectodermal dysplasia. He endured the pain and asked God, “Why do I have this condition?” Find out not only how he endured but how he has triumphed and is sharing a message of love and hope.

Hazel Glows With Her New Teeth

Your five-year-old daughter wearing her first dentures can be surreal. Just ask Sarah Hamilton. The mom shares about how the teeth have impacted Hazel’s eating and speech and how they are having to battle their insurance to get benefits.

Born This Way

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.

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.

Dating and Ectodermal Dysplasias

David Cory talks about the good, the bad and the “What did she just say?!” of dating if you have ectodermal dysplasia. Read about his adventures in dating and what’s he learned about opening yourself to love.