CFC is a rare genetic disorder characterized by a distinctive facial appearance, unusually sparse, brittle, curly hair, skin abnormalities, heart malformations, growth delays, and varying degrees of developmental delays. Affected individuals may have behavior problems, learning difficulties, etc.
Currently, there are 200-300 known cases of CFC individuals in the US.
CFC International is a non-profit organization that is mainly involved with networking support groups and the research for medical treatments.
Please visit their web page for more information.
A family in Seymour has been strongly affected by CFC. The couple, Erik and Angie have two sons, Luke, who has been diagnosed with CFC, and Erik, jr. The family spent years trying to figure out what was wrong with Luke. Since Angie and Erik had found the diagnosis, the family was disrupted again when Angie was diagnosed with Lung Cancer. Unfortunately, she's passed on since then and Erik is faced with raising his two sons on his own.
Please take the time to read the full story on the web page. After reading the story about Luke's family, think about how this would disrupt your family or someone close to you.
You can get to it by going to www.cfcsyndrome.org then go to news & events> family stories> Luke's Family