I’ve been telling my story on my various blogs on and off for 12 years. It’s been seven years since I revealed my face on MySpace – since I’ve told my true story about Ichthyosis. And doing so has been the most empowering thing. I am a strong believer that blogging gives people a powerful voice that is heard. Many patients and parents of children with Ichthyosis have encountered stares, comments and hurt around their condition that has sometimes scarred their confidence and quietened their voices. Additionally, it is often perceived that because of a person’s visible difference, their life [...]