Today as part of Ichthyosis awareness month, I'm sharing a video from Crystal.She talks about the difficulties of getting and keeping a job - employers discriminate because of her skin. I hope she catches a break soon. Many people think Ichthyosis is *just* a skin condition, … [Read more...]
Ichthyosis Awareness: using Moo Goo cream to de-scale my scalp.
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: Silje and Marion’s story: “I thought I had prepared for the possibility to get a “different” child.”
Silje is a young mum from Norway. Her beautiful baby Marion was born with Epidermolytic ichthyosis. She writes of the unpreparedness and worry of having a baby with a visible difference and disability, and also the way Marion has changed her life for the … [Read more...]
Ichthyosis Awareness Month – Brooklyn’s story – “Brooklyn isn’t the only one with Ichthyosis. We all get covered in lotion and flakes and we wouldn’t change it for normal any day.”
This post is from Brooklyn's mum - I really like the deeply personal reflection. She writes about how disability - including Ichthyosis - has changed her way of thinking. She reveals how her life has changed for the better because of Brooklyn. She is very candid in her views … [Read more...]
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