Hi everyone. I suppose some of you may remember that back in late January I had brunch with Carly Findlay and linked her blog in. I meant to do a post about her, but I kept forgetting (sorry Carly! :/). Well, now it’s Ichthyosis Awareness Month and I thought I’d better bloody well get on with writing that post I’d kept saying to myself that I’d write.
Carly Findlay is a blogger, writer, speaker and appearance activist, using her talents to challenge “people’s thinking about what it’s like to have a visibly different appearance”. She has a condition called ichthyosis and is currently (as she mentions below) planning a wedding with her lovely fiance, a blog course and the Ichthyosis Meet, while holding down a job. 🙂 She’s a really nice woman.
From her blog: “Ichthyosis (ick-thee-o-ses) is the name of a rare genetic skin disorder. Since it’s a genetic mutation, it isn’t contagious–you can’t “catch” it. Ichthyosis causes the skin to build up and scale, causing it to be extremely dry, among other problems. Most types of ichthyosis are present at birth, and are life-long. Currently, there is no cure, only treatments.
“I am red and scaly. My skin gets itchy and sore. My face is the reddest part of my body because it is exposed to the elements. I get infections easily – generally on my legs, but sometimes on my face. Sometimes my infections result in hospital stays where I am bandaged up like a mummy. Infections can make me very sore.
My skin condition affects lots of other things in my body. My eyes, ears, digestive system, temperature and metabolism are all affected to a degree. I see lots of doctors!
“While it is medically challenging, the social challenges can be even more difficult. I am stared at, commented on and teased every day. I try to deal with peoples’ questions and rudeness the best way I can, with a smile and a polite answer (most of the time). Sometimes all I can do is laugh at the stupidity of some people!”
[found here: http://carlyfindlay.blogspot.com.au/p/what-is-ichthyosis.html]
So without further ado, this is an extract from her opening story for the month yesterday – go to her blog to read the full story and lots of other things! [found here: http://carlyfindlay.blogspot.com.au/2015/05/introducing-ichthyosis-awareness-month.html?utm_source=feedburner&utm_medium=email&utm_campaign=Feed:+TuneIntoRadioCarly+(Tune+into+Radio+Carly)%5D:
01 May 2015
Introducing Ichthyosis Awareness Month 2015. “Create the things you wish existed.”
Today is the start of Ichthyosis Awareness Month – where I will be sharing stories by patients and parents affected by the rare severe skin condition Ichthyosis. There will be one or two stories each day. You’ll get to know that the range of Ichthyosis types is extensive and the symptoms, appearance and treatment of each varies. You will read about peoples’ struggle to come to terms with a life changing condition, and also the courage to ignore society’s perceptions of difference and gain the self confidence to love and celebrate themselves. The contributors range in age – from 11 years old to their mid 60s. And you’ll also read about some of the cultural differences – there are contributors from Norway, Belarus and Indonesia this year. I am so excited to bring these stories to you. You will be able to read all of the posts here, as they’re published.
And so my theme for Ichthyosis Awareness Month 2015 is community. The blog project brings people together online, and the Australian Ichthyosis Meet will bring people together face to face – allowing us to laugh and maybe cry and experience the emotions of being with people who just get us.
For more information and to support research and networks for Ichthyosis, visit:
Foundation for Skin and Related Skin Types (FIRST)
Ichthyosis Support Group
Friends of Ichthyosis
I’m not asking you to donate money. I do ask that you read and share these stories widely – to encourage people to think about how they react to visible difference and disability, and to continue to build a supportive community. That will make the world of difference.