May. It was a busy month. Five countries, five plane trips, two longish train trips, lots of freelance writing, three writing classes taught, a bout of very sore skin, a lurgy that could only be cured with doses of brandy and dry ginger ale and 41 stories written by people … [Read more...]
Ichthyosis Awareness Month: meeting Matthew, Aurora and Michael in Chicago. “We people who have a skin condition like this have to live a harder life then you other people do.”
I had dinner in Chicago with a family that has three children with Lamellar Ichthyosis. Denise and Mike - the parents of the children - had driven an hour one cold Sunday night to have dinner with me. We ate deep dish pizzas, talked and laughed and nodded in empathy.The children … [Read more...]
Ichthyosis Awareness Month: Tania, Litia and Zadie’s story. “I know I’m a lucky mum.”
Last year I had lunch with a wonderful family - Tania and Edwin, and their two little girls Litia and Zadie. Litia and Zadie were funny, artistic and really good conversationalists. They were cute and giggly. As I wrote last year, They guessed my age at 90 and 20, and then asking … [Read more...]
Ichthyosis Awareness Month: Bailey’s story. “I began to believe that I am beautiful. I chose to accept my skin and began to love it.”
Bailey was one of the stars in last year's Ichthyosis Awareness Month Blog Project. This past year she's had success in beauty pageants - not only showcasing physical beauty but talent and intelligence too. She's got Lamellar Ichthyosis and a very positive outlook. She did a … [Read more...]
Ichthyosis Awareness Month: Jayden and Jane’s story. “there are people in this world that are born a little bit different and that it’s ok,”
Little Jayden has Harlequin Ichthyosis - his mum Jane writes of the challenges of giving birth to a baby with a very rare and severe skin condition. As she writes, Ichthyosis can affect so much of a baby's development - from feeding and weight gain to movement. She cites the … [Read more...]
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