Carly Findlay

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Ichthyosis Awareness Month

May 3, 2021 Carly Findlay Leave a Comment

Image: a full length photo of a woman with a red face, dark curly hair tied back, wearing a yellow, black and white dress – fine stripes form flowers. Shes also got a big sunflower brooch on her dress, and has sunglasses and silver sandals on. She’s standing under a green leafy arch with lemons on it, in a rooftop bar. Buildings are behind, and the sky is cloudy.


May is Ichthyosis Awareness Month.

Here I am, for your awareness. I have Ichthyosis – the type I have is Netherton’s Syndrome. There are around 25 types of Ichthyosis, ranging in severity, appearance and treatments. Mine is one of the obvious, severe types (itchy, painful and scaly red skin), and the treatment I use (paraffin ointment) is very visible); but many people have Ichthyosis that can be hidden, or doesn’t present in an obvious way.

I used to do a month long blog series – profiling different people who have Ichthyosis. I did it for three or four years. It was a lot of work, and I became despondent that despite raising so much awareness, people with Ichthyosis still experience horrific discrimination; and exploitation by the media and parental over sharing.

Awareness is often not for our benefit. It’s to make people without Ichthyosis feel comfortable and educated, and to put their lives into perspective. If I can go out looking like this (cue hand waving around a face, the international gesture for “I don’t know how to talk about your face”), then what the hell do they have to complain about?

I’m cynical about Ichthyosis awareness campaigns and support orgs. But I’m passionate about the power of community. I am so grateful to be friends with so many people around the world who also have Ichthyosis.

I raise awareness for them – for them to see what’s possible and to know their frustration (and joy) is valid, and to help them to recognise discrimination and advocate against it. I also do it so people with Ichthyosis can find pride. And I do it for new parents who are scared about their children’s futures; and also for medical professionals.

Knowing we aren’t alone with this condition is incredibly important.
💛🍋
For more of my writing on living with Ichthyosis, you can read my memoir, Say Hello. 
If this post – or others – has helped you think about skin conditions differently, or you’ll use it in your work, you  can buy me a drink! Thanks!

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Copyright

The material on Tune into Radio Carly is copyright. The writing in this blog is by Carly Findlay unless otherwise stated. Most photos in this blog are by Carly Findlay unless otherwise stated. Please do not reproduce without permission from Carly Findlay. This blog represents my personal opinions and experiences. It does not reflect those of my employers'. The information I provide about ichthyosis is mostly based on personal experiences. Please seek medical advice or counseling before trying any new treatments I've written about. Where stared, I use affiliate links on this blog. By clicking them, I receive a small percentage of the purchase.

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