In July I was alerted to some children in Wajir, Kenya who are suffering terribly from Ichthyosis. I rarely use the term 'suffering' but these children really are. My heart breaks for them.The children haven't received adequate medical treatment and are hidden from their … [Read more...]
Australian Centre for Leadership for Women Diversity Awards
On Wednesday night I had the pleasure of attending the Australian Centre for Leadership for Women Diversity Awards in Sydney. From the website:"ACLW’s Awards Program commenced in 2006, culminating so far in three national awards for women’s advancement, with more than 60 … [Read more...]
Ichthyosis in developing countries – India
Last week, an article was published about two young siblings in India living with Lamellar Ichthyosis. The article describes the children as having snake skin.Sayali (13) and Siddhant (11) Kapase live in Pune, India. The children, along with the parents, Sarika and Santosh … [Read more...]
Language really does matter when reporting about people living with Ichthyosis. Harper’s real story.
This article from Stock News USA came up in my google alerts yesterday morning. You can read the full text here. "Suffering from horrible harlequin Ichthyosis.""When she was born, she looked like an alien. It was very traumatic""Her bizarre condition."Those three excerpts is … [Read more...]
9 Instagram stars who have Ichthyosis. (And please consider buying me a drink!)
A while back I wrote about the ways you can use instagram to connect with the chronic illness community. And my mate Starbrite Warrior wrote about this too. It's so ace to connect with others who know what you go through, isn't it? And Instagram is a good platform to use when … [Read more...]
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