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!