Elizabeth Hoverman faced treatment failures and a pandemic delay to get her beautiful smile. The artist shares her exhausting six-year journey and why she can’t stop smiling.
They dissed him. Called him names. Made fun of his appearance. Their voices rang in his ears every day. Voices filled with ridicule and hate. And for what reason? Simply because he was affected by a rare disorder. One day, Cyprian Katongo chose to listen to different voices. His life of suffering took a new direction….one he defines as H.E.D.
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.
Kaitlyn Squibb knew all the ways that x-linked hypohidrotic ectodermal dysplasia affected her body. But, she’s finding strength as she learns how it impacts her emotions, too.
Olivia was surprised that strangers would want to hear her story. She’s promoting acceptance through Operation in Full Bloom. Read the finale to this pageant winner’s story.
Olivia Daniels has faced many challenges in her 22 years. She learned to channel her feelings and experiences into acts of service and kindness. She’s an amazing creative force for good! Find out how this pageant champion is using her platform to raise awareness of ectodermal dysplasias and serve others.
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.
Boys affected by incontinentia pigmenti typically do not survive pregnancy. The condition is an X-linked dominant “lethal” condition. Meet Jamistyn, a 6-year-old boy with IP who not only survived but is thriving! Read more about his extremely rare story!