Weekly Round-Up 3 of Ichthyosis Awareness Month

Hi again. I think you know the drill by now, but: here’s this week’s round-up of stories from Carly’s blog about Ichthyosis Awareness Month. All in Carly’s/ their own words, not mine:

Ichthyosis Awareness Month – Denise’s story: “I got tired of wanting to hide.”

This post is definitely up there with one of my favourites! Denise writes about how she got tired of hiding her skin and decided to have pedicures and wear sandals. She also writes of the importance of letting go of the self consciousness, because it’s freeing. She’s let go of her personal hangups, and doesn’t worry how she might make people react to her skin – because most people aren’t worried about someone else’s skin. She’s chosen to surround herself who don’t pause when they encounter her – and that’s so valuable. Denise has Lamellar Ichthyosis and is in her 30s – married with a toddler. 
Meet Denise.

Ichthyosis Awareness Month – Nicolle’s story: “I’m looking nowhere near the age of 78 as the doctor predicted!”

I came across Nicolle online when I was featured on the Make it Look Easy Facebook page.  She commented on my photo, saying she also has Ichthyosis. Nicolle has Ichthyosis Vulgaris and lives in South Australia. 
Meet Nicolle. 

Ichthyosis Awareness Month – Brooklyn’s story – “Brooklyn isn’t the only one with Ichthyosis. We all get covered in lotion and flakes and we wouldn’t change it for normal any day.”

This post is from Brooklyn’s mum – I really like the deeply personal reflection. She writes about how disability – including Ichthyosis – has changed her way of thinking. She reveals how her life has changed for the better because of Brooklyn. She is very candid in her views about disability before Brooklyn was born – but since Brooklyn’s birth, she’s realised that disability is not a burden, and Ichthyosis is awesome. Brooklyn is 18 months and has Lamellar Ichthyosis.
Meet Brooklyn and her mother.


Ichthyosis Awareness Month: Silje and Marion’s story: “I thought I had prepared for the possibility to get a “different” child.”

Silje is a young mum from Norway. Her beautiful baby Marion was born with Epidermolytic ichthyosis. She writes of the unpreparedness and worry of having a baby with a visible difference and disability, and also the way Marion has changed her life for the better. 
Meet Silje and Marion. 


Ichthyosis Awareness Month – Bree and Kristy’s story: “No matter what, she always has a smile on her face, and when she doesn’t, it doesn’t take much effort to get one out of her. “

I met Bree and her mum Kristy at the Australian Ichthyosis Meet. She’s adorable. One of my highlights was seeing Adam getting Bree to smile by making funny faces. So cute!
Kristy writes of the challenges of having a baby with Ichthyosis – the condition can cause many other complications. Bree has not yet received an official diagnosis, which I am sure makes it difficult for getting the right treatment. But the short time I spent with Bree and Kristy showed me just how happy and loved she is, and what a great job Kristy is doing.
Meet Bree and Kristy.


Ichthyosis Awareness Month – Christine’s story: “I am still just as ordinary as anyone else.”

Christine was born with Ichthyosis form Erythroderma. She is in her 50s and lives in Canada. Christine has been an incredible supporter of the Ichthyosis Awareness Month blog project – I am so grateful. She not only shares her own story, but some perspectives from her family. 

Meet Christine. 

Ichthyosis Awareness Month – Kaleigh’s story: “Life is short and I’m not going to spend it letting my condition run my life.”

I first met Kaleigh after I read her article on Yahoo about life with Netherton’s Syndrome. She writes so well – I’ve been following her work ever since. She has a great perspective on life. And such a supportive family. Meet Kaleigh.


Ichthyosis Awareness Month – Casey’s story: ” I love to answer questions, when asked respectfully and with kindness.”

This morning, Casey’s mum Kimberly sent me a message asking if I wanted to share Casey’s story. Of course I wanted to. What a beautiful girl, and what a powerful story. I really admire parents who come forward to say how tiring and ‘rage provoking’ whispers, stares and pointed fingers can be. A little girl – and adult even – should not have to put up with this. Get to know someone before making assumptions and intimidating them with stares and whispers. As Kimberly writes, ” If you happen to have the pleasure of seeing or meeting her, say Hello. I love to answer questions, when asked respectfully and with kindness.” And that goes for all of us. 
Casey is seven years old, lives in Canada and has Ichthyosis form Erythroderma. A big thanks to her Mum for asking me to publish this. 
Meet Casey.

Ichthyosis Awareness Month: Daniel’s adoption story.

Little Daniel has Harlequin Ichthyosis. When he was born, his birth mother grieved over giving birth to another child affected by Ichthyosis. Daniel’s doctors were doing the best they could to save his life, and to find him a family who could care for him. Nicole and Mark gave Daniel a new chance at life. They were willing to help him, despite knowing very little about Ichthyosis. Read their adoption story. It’s so beautiful. 
They have received some wonderful support from adults and facilities affected by Ichthyosis.

Meet Daniel and his parents Nicole and Mark. Two amazing people who has given a little boy the best chance at life.

Ichthyosis Awareness Month – Kelsey’s story: “I remember telling my younger sister once that I was part dinosaur.”

Today Kelsey tells her story. I love the perspective and humour Lamellar Ichthyosis has given her. And similar to me, she’s proved doctors wrong, showing them she can do so much more than they expected of her. 

Meet Kelsey.