Cyprian Katongo encourages others affected by ectodermal dysplasia to be who they are and not give in to the bullies who may diss them. Whether you live in Africa, the United States or somewhere else, he has a message of hope for you.
At 45, Erica Merriweather has spent a lifetime being treating differently, even bullied, because her teeth are different due to ectodermal dysplasia. Now, she’s fighting to get treatment.
With two young sons affected by hyphidrotic ectodermal dysplasia, Anissa Morgan has faced insurance denials, numerous hospitalizations, child care issues and finding doctors to treat them. That’s on top of learning how to care for their varied symptoms. But this determined mother has learned lessons along the way and is teaching her sons that they are well loved. Learn more here.
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.
Heather Martin struggled to find answers after her son Isaiah did not fully develop teeth from birth. She was told by multiple dentists that his teeth should be capped, but she did not listen. Follow Heather’s journey as she fianlly finds the answers she was looking for in a diagnosis.
Jorgelina, a mother in Argentina, was shocked and sad when one of her twin sons was diagnosed with ectodermal dysplasia. As an English teacher, she decided to learn everything she could. But, it was her son, Jeronimo, who became her best teacher and changed her attitude.
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.
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.