I met little Jack Oldacres and his parents in London last year. It was one of my favourites days abroad. You can read about our meeting here. I love seeing photos of his progress on Facebook - he's at nursery school now and plays football on the weekends. Jack's Dad, Danny, … [Read more...]
Ichthyosis Awareness Month: FIRST ~ the official support foundation.
Moureen Wenik is the program and research director at the Foundation for Ichthyosis and Related Skin Types - also known as FIRST. I asked her to tell me about the Foundation, her role and how it can help patients and families affected by Ichthyosis. FIRST is based in America, but … [Read more...]
Ichthyosis Awareness Month: Mui’s story ~ “I like that the fact I stand out goes right out the window and the real world comes in.”
When I first started talking with Mui online, I flicked through her photo albums and was taken aback by how similar we look. (The doctors have told me that the genetic make up of people with Ichthyosis means there's a likelihood of similar face shape and bone structure.) I … [Read more...]
Ichthyosis Awareness Month: Amplifying voices and faces through blogging.
I am so excited to introduce you to the Ichthyosis Awareness Month blog project! This project will run throughout May. "Ichthyosis is a rare genetic or acquired skin condition affecting an estimated 10-20 individuals per Million. Ichthyosis is characterised by persistently dry, … [Read more...]
The Ichthyosis Awareness Month blog project – launching 1 May 2013
I've been working on a very big project that I'm so proud of. All will be revealed here tomorrow and run throughout May. … [Read more...]
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