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.

Diagnosed Over the Phone With Ectodermal Dysplasia

When Mason Langefeld still had not developed any teeth by his one-year-old check-up, his mom, Renee, decided to call a local dentist. He asked her a few questions that finally pointed them toward answers and a resource to help them care for their son. Read how they successfully fought their insurance company to pay for their son’s dentures.

Evan’s Story – Part II

(Editor’s Note:  The following story is part two in a series written by Karen Forman, the mom to an adult son affected by hypohidrotic ectodermal dysplasia. Read part one.) By Karen Forman                 “Life isn’t about waiting for the storm to pass. It’s about learning to dance in…

Evan’s Story

By Karen Forman My favorite quote of late has been Life isn’t about waiting for the storm to pass.  It’s about learning to dance in the rain. Thirty-three years ago, I was not that wise.  Now I dance. Evan is a smart, engaging and talented adult with a unique beginning into this world.  So, Evan…