I've been following Cora's blog for a while - I admire how she writes about coming to terms with her daughter Ashlynne's Confetti Ichthyosis. Life has been hard for them but they've chosen to celebrate, to work as a team - to dance in the rain, as Cora writes. The connections … [Read more...]
What we learnt at the Australian Ichthyosis meet.
We learnt so much at the Australian Ichthyosis Meet. We learnt from doctors and nurses, but more importantly, from each other. I was struck by how articulate and confident the children were speaking up about what works for them and what they’d like to do next as a part of the … [Read more...]
Ichthyosis Awareness Month: Casey and Chaz’s story: “We see Chaz as our one in a million and we are so lucky to have him in our life.”
Last year I received an email from a dermatologist asking if he could pass on my blog to new parents of a little baby with Ichthyosis. He wrote: "I am asking firstly if you would be happy for me to direct the family to your blog. Also, your advice in managing Netherton's is … [Read more...]
Ichthyosis Awareness Month – Annaliese and Jossilynn’s story: “Teaching friends, family, and even sometimes doctors about Ichthyosis can be very rewarding, but also very tiring.”
Today Annaliese shares her story of being a mum to Jossilynn - a little girl with Epidermolytic Ichthyosis. I really like how she acknowledges how hard educating people about Ichthyosis is, and that she is in a good position to educate doctors about her daughter's skin. Such … [Read more...]
Ichthyosis Awareness Month – Becky’s story: “I realize that being normal is what I am.”
Tonight Becky tells her story of life with Lamellar Ichthyosis. It took her a long way to come to terms with her condition - and the turning point for her was Camp Discovery. I am so glad she's stopped worrying and has made her health and happiness a priority.Meet Becky."What is … [Read more...]
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