Ichthyosis Awareness Month

Carly Findlay
May was Ichthyosis Awareness Month - aimed at raising awareness of Ichthyosis. DermnetNZ states Ichthyosis is a rare genetic or acquired skin condition affecting an estimated 10-20 individuals per million. Ichthyosis is characterised by persistently dry, thickened, rough, fish scale skin. There are at least 20 varieties of ichthyosis, including inherited and acquired forms. People with ichthyosis have a normal lifespan. However those with very severe ichthyosis may need to spend several hours each day caring for their skin so they can lead as much of a normal life as possible**.
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Carly Findlay on 01/08/2013
A logo of a pink fish on a white background

Writer Carly Findlay opened her blog for Ichthyosis Awareness Month - with wonderful results.

Ichthyosis Awareness Month, founded by FIRST – The Foundation for Ichthyosis and Related Skin Types, was quite American-centric, with events and media taking place mostly in America. I wanted to bring the 'month' to Australia, and worldwide, through my blog.

My blog is a place where I share my own story about living with this rare skin condition, and have received lots of support and opportunities through doing so. My blog has enabled me to educate people about Ichthyosis in a non-sensationalist way (as I once wrote on DiVine.)

People affected by the condition (both patients and parents) have found my blog and used it as a source of information, and told me that my story offers them some hope. But my story is only one of many, and I wanted to open my blog for others to share their story.

So I asked more than 30 of my online friends affected by Ichthyosis – patients ranging from seven years old to in their mid 50s, parents of children with the condition, grandparents, the leader of a support group, a dietician and my parents – to share their stories on my blog throughout May. I asked them to show a life well lived – to give hope to others in the Ichthyosis community and also to educate people about the condition (including how it varies), and to break down stigmas of living with a condition that can be so visually confronting. The symptoms, appearances and experiences differ between everyone who has shared their stories. Some people have written about a coming of age experience - working to accepting their condition, and others have written about how their lives have changed since becoming a parent to a child with Ichthyosis

As the month went on, lots of people affected by Ichthyosis read the stories and shared them with their families and friends. The response was incredible - throughout May my blog had over 93,000 views! I had people contact me to ask if they too could share their stories too, and so I added to the project. All stories have been full of hope.

The contributors have been thankful for giving them a chance to tell their story - for some this is the first time they've been so public about their Ichthyosis. They've been excited to see themselves in print, and have also taken the time to read, comment on, and share all of the other stories in the project. I've been able to put families in touch. And I am proud to know that now they have been shared, these stories provide hope.

On a personal note, I enjoyed learning about the various forms of Ichthyosis and getting to know these, mostly online, friends through their stories. I also featured my parent's stories, and reading these gave me great insight into the struggles they faced while raising me.

The Internet can be brutal to people with disabilities and visible differences like Ichthyosis. I see many nasty comments on pictures of people with disabilities circulated on Facebook. I created this blog project to foster a positive community. So much respect was shown to the new contributors to my blog - not one negative comment was received - and so many readers commented that they wanted more. I am now opening my blog up to guest posts from people affected by Ichthyosis, and all types of disabilities and visible differences, year round.

Through the Ichthyosis Awareness Month blog project, I was able to educate, not exploit. And as a result, many people are a little more educated about Ichthyosis, and so many people are feeling a little less alone with their Ichthyosis journey.

You can read all of the stories in my Ichthyosis Awareness Month blog project here: http://carlyfindlay.blogspot.com.au/search/label/Ichthyosis%20Awareness%20Month

**Source: http://dermnetnz.org/scaly/ichthyosis.html

Readers comments (1)

Congratulations on this great initiative, Carly. This is a wonderful example of how blogging can used creatively, constructively and compassionately. It's fantastic that you have increased awareness of Ichythyosis and similar conditions by inviting people to contribute to your blog, and it's terrific that you've built and nurtured a community around this. The fact that you have enabled people to share their own stories in their own voices in ways they may perhaps never have considered doing is really powerful. It's really generous too. I'm looking forward to exploring these stories and understanding more about people's experiences.

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