Clouston Syndrome: Perfectly Different

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.

It Was Time That I Stop Ignoring the Thing That Made Me Most Unique

By Heather McKelvie In 1996, my mother and I went the Family Conference, which was in St. Louis that year.  Looking back, I don’t remember very much about it.  Perhaps because I was a teenager, I was in denial about the fact that my EEC was a life-long condition that I would always have to deal with. …