I'm a pretty private person when it comes to the actual maintenance of my skin. Not many see me washing my face or the scattering of skin flakes that cover every surface I touch. You might have noticed from photos that my scalp gets flaky, and my hair is pretty short. I wrote … [Read more...]
Ichthyosis Awareness Month: Rethinking Kindness – a guest post by Ainsley Kyder-Gould. (Plus download True Blue Hand.)
I first met Ainsley and her husband in January 2015. Her little girl has Ichthyosis. We chatted for hours - exchanging anecdotes and advice. I finally met her beautiful daughter just before our wedding. Oh my the cuteness! The week before our wedding, Ainsley sent me a video of … [Read more...]
Ichthyosis Awareness Month 2016 – we must move past raising awareness.
It's May and that means it's Ichthyosis Awareness Month. This isn't my usual chipper post. This is me being cynical. From the Royal Children's Hospital website: "Ichthyosis means 'fish scale' and is the name of a group of genetic skin diseases that cause dry, scaly, … [Read more...]
Ichthyosis awareness: Accepting My Limits – a guest post from Hunter Steinitz.
I've admired Hunter for years - shes a star. She is a great role model in the Ichthyosis community - she loves life to the full, and has become a good friend (as has her Dad, Mark). Mark shared their story here in 2014. Hunter has Harlequin Ichthyosis. She recently spent a … [Read more...]
A letter to CEO Susan Wojcicki: on bullying of people with rare medical conditions on YouTube
UPDATE: 3 October - the video has been taken down. Victory! Read about that on the South China Morning Post. Dear Susan Wojcicki, CEO YouTube.I am writing to you about cyber bullying on YouTube. You must be so proud of this platform you lead - it is a trove of entertainment and … [Read more...]
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