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"Confetti Skin, Beauty Within" is our blog about ichthyosis and its effect on our lives. Rachel and our three boys are affected with the form of ichthyosis called "icthyosis en confetti, type 2".

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Here's our summary of our best and most important posts of 2012.

Life with Ichthyosis: Judging By Appearances

Today we are pleased to present a guest post from Kyriaki, a friend from Down Under who we met online. What is it with articulate Australians advocating about ichthyosis online?

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I grew up with people judging me for my looks, especially in summer. Not just when I was older and judged by my peers, but adults judged me (and my parents) for the way I looked, assuming it as my (or their) fault. From their perspective and assumption it was – dry, flaking skin that peeled off in scales and sheets was a symptom of only one thing, which was having been badly sunburned. And to be honest, it would have been hard to the untrained eye to tell my skin apart from that of a child recovering from a bad sunburn, except that my skin was already covered in fine wrinkles from a very early age…and that it looked like this no matter what I did, or how much I stayed out of the sun.

I live in Australia, where the sun is much harsher than in many places in the world, and anyone with fair skin is likely to be sunburned very easily. Melanoma is a very dangerous and common form of cancer here as a result, and as children we were taught from a very early age to ‘slip, slop, slap’ – slip on a shirt, slop on sunscreen and slap on a hat – whenever going outside in summer to play or swim or even just go for a walk. Sun protection is heavily encouraged, and even mandated at schools – if you do not have a hat, you do not get to go outside and play at recess or lunch (which is eaten outside unless it’s incredibly hot or raining). This culture has been very healthy and doubtless saved many lives, but it has also created a culture where people pass judgement for sunburn, especially sunburn bad enough to peel, and pass that judgement even more heavily on parents of young children who apparently have allowed to get that badly burned.

In actual fact, I have lamellar ichthyosis (a form of autosomal recessive congenital ichthyosis, or ARCI), which has given me dry skin that forms scales and peels off for my whole life. It’s head to toe, it’s nothing to do with staying outside too much, and it’s not the fault of myself nor my parents. However, this hasn’t stopped people not only judging, but commenting – without ever having met me before! People in the supermarket would comment to me or my mother that I must have stayed out in the sun too much, or strangers at church events, or parents of other children, or just about anyone at all. It didn’t matter that I wore a hat whenever I was outside, that I wore long sleeves a lot, or anything like that – because the skin was peeling and flaking off, it had to be sunburn, and for some reason the usual rules about making personal comments on another’s appearance were ignored to comment – sometimes well-meaningly, sometimes not so – on my appearance to myself or, more commonly, my parents.

As I grew older I found that wearing light long sleeves and a long skirt or pants in summer was easier than explaining or being stared at, and also more practical for reducing heat exhaustion since the ichthyosis also makes me unable to sweat and regulate my temperature. It was easier just to hide, and at least this way I wouldn’t get sunburned and justify their comments! I thought by the time I became an adult that the comments would stop, and mostly they did but I still received pointed comments from total strangers on days when the skin on my face in particular was very dry. The commenters were usually embarrassed after my explanation, which I tried to give as patiently as possible, but since their remarks came from ignorance I saw it as my duty to educate them.

These days I am 25 years old, and have found treatments that largely minimise the obvious dryness and flakiness of my skin, although it still flares up from time to time and gives me issues. My skin will never look normal, exactly, but I am glad that for the most part it looks within the norms of ‘dry skin’ and goes unremarked on by the average person. I’m told that stories like mine of being commented on by total strangers and judged for being sunburned or negligent are common amongst people with certain types of ichthyosis, and personal remarks on our appearance are common to most of us whether it’s sunburn-like or otherwise. I am not sure why people believe that they have the right to make comments like this, or react negatively towards us based on our appearance, but unfortunately it’s true.

I spent my childhood and early adulthood trying to educate those who made false assumptions and I hope that has born fruit in the lives of some of the people I have spoken to, but I know that there is much more to do, which is why I am glad for organisations like FIRST, the Foundation for Ichthyosis and Related Skin Types, and blogs like this who raise awareness of the condition and of the people with it, who are people with as much dignity as any other, no matter how strange we may or may not look at times. We’ve come a long way from being circus freaks, and I’m glad that things are finally beginning to change through the dedicated work of many people.

4 comments to Life with Ichthyosis: Judging By Appearances

  • Jeffrey "Kanga" Gridley

    Great piece Kyrie!

  • Kelsey Chapin

    This is an awesome piece!I also have lamellar icthyosis and can relate with you one-hundred percent! Thanks for sharing your story!

  • angela

    thank you for sharing your experience with us. I have a 14 month old daughter with ekv no family history. we are from Sydney Australia.

    thank you

  • rasha

    Dear Rachel,

    I would like to know the treatment you used please.

    Many thanks,
    Rasha

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