There's an ongoing theme with these stories for the Ichthyosis Awareness Month Blog Project - and that's gratefulness towards the skin condition that has made life such a challenge. Brittany writes about her gratitude to Ichthyosis shaping her current outlook.She spent many years … [Read more...]
Ichthyosis Awareness Month: Sami and Mason’s story. “I ask of learn about Ichthyosis for fear my dad might actually be half crocodile.”
Sami writes of two generations of Ichthyosis in her family - her Dad and her son Mason. They both have X-Linked Ichthyosis.Reading her story of the stigma - perhaps self imposed - that her dad felt makes me so sad. There is often great shame in looking different, and also around … [Read more...]
Ichthyosis Awareness Month: Brenna and Courtney’s story. “Asking about someone’s appearance is a lot like asking someone how much money is in their bank account.”
Brenna and Courtney Westlake wrote for last year's Ichthyosis Awareness Month Blog Project. Brenna is two now - and she's grown so much. She wears glasses now (so cute!) and is progressing with her feeding. Courtney is learning a lot about the social aspects of Ichthyosis - her … [Read more...]
Ichthyosis Awareness Month: Kallie, Jane and Kati’s story. “We don’t know anybody that is alive that has skin like me. I am extra extra extra special.”
One of the best things about my stay in New Orleans was meeting Kallie, her Mum Kati and her grandmother who Kallie calls Gane. They made a two and a half hour trip to see me, and it was a lovely afternoon.Kallie is a sweet little girl. She and I played Tic Tac Toe (she's better … [Read more...]
Ichthyosis Awareness Month: Laura’s story. “There will always be those who stare or say something offensive, but it’s easier to brush those off when you have positive interactions with others as well.”
I first noticed Laura when she started posting a lot of wedding photos on Facebook! I was so excited for her - she made a beautiful bride.Laura's story continues the theme of living a 'normal' life - she has a job, friends and a husband, and her Lamellar Ichthyosis is secondary … [Read more...]
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