I am so excited to share Stephanie's story for Ichthyosis Awareness Month 2015! I've been her online friend for years, and it's been a delight following her journey. She's given hope to so many patients and parents. Steph's got Harlequin Ichthyosis - the most severe form. I first … [Read more...]
Ichthyosis Awareness Month – Alexander and Maria’s stories: “I try to ignore these comments and stares but it makes me sad, and I feel so different.”
A mother and son share their stories today. They're coming to the Australian Ichthyosis Meet on Saturday - and both Alexander and Maria are looking forward to making new connections. Their stories reiterate the need for connections with other patients and families affected … [Read more...]
Introducing Ichthyosis Awareness Month 2015. “Create the things you wish existed.”
Today is the start of Ichthyosis Awareness Month - where I will be sharing stories by patients and parents affected by the rare severe skin condition Ichthyosis. There will be one or two stories each day. You’ll get to know that the range of Ichthyosis types is extensive and the … [Read more...]
Coming up: Ichthyosis Awareness Month 2015
I have spent the weekend editing and scheduling stories for Ichthyosis Awareness Month 2015 - it begins next week! I've already received a heap of stories to share. The whole month of May will be dedicated to raising awareness about the rare, severe skin condition Ichthyosis on … [Read more...]
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