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.
Learn which of the 180+ different types of ectodermal dysplasia are the most common among NFED families. Update your profile with the type that affects your family. You and your love ones count!
Jeanne Wang wanted to give back to the organization that helped her when her son was diagnosed with a rare syndrome called EEC. She quickly found that education and raising awareness empowered her!
Suzanne lives in Pennsylvania with her husband, Will, and their children, Caitlin and Tyler. Mom and son are both affected by ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome. This tenacious educator grew up never knowing that her symptoms were actually a part of a genetic disorder. In this interview, Suzanne discusses growing up without a diagnosis, finding her…