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.

While I’ve still been working hard to collate, edit and upload the posts this month, I have sourced help from a few editors who I’ll be paying to edit the posts and create social media content. I have not even made a video for this year’s awareness month - I hope to have one for the final post. This is because I’ve been so busy planning the first ever Australian Ichthyosis Meet, to be held next Saturday at the Melbourne Zoo. (There’s nothing like planning two events - one online and one meet - at once, and on top of my day job! Oh and did I mention I'm planning my wedding too!?!) I am SO excited! But so tired!

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.

Last September I was sitting in a room full of bloggers, inspired by Darren Rowse’s keynote. I remember him encouraging us to nurture our communities and suggested we invite our online communities to meet in person. And then I saw a video of an event that Olympus ran, bringing Fat Mum Slim’s readers together at a series of lunches. It clicked. I wanted to bring together the community I’ve helped to build and foster. I wanted to hold a meet for the Australian Ichthyosis community.

There had been talk about it in our Facebook group last year - but nothing concrete was organised. I used my event planning skills and networks I’ve developed through blogging to create this meet. People and organisations have been very generous - and I am so thankful to everyone who has donated money or products.

While the meet is about the attendees, I created it because it filled a gap in my past. It will focus on the social aspects of Ichthyosis, rather than the medical aspects. There wasn’t this community when I grew up. There was just medical support available - which is fine, but people with rare conditions need social support from peers. I’ve been to many medical conferences, but nothing social. At medical conferences, the patients are often exhibits. I wanted this meet to be inclusive - where patients are the stars.

Some attendees - adults and children - have said they’ve never met anyone else with the condition before. They are very excited to make connections and learn from the doctors present. The internet has brought us itchy, fishy skinned together. We are so lucky.

So while I’m going to be quiet on the blog and social media leading up to the meet, you can read others’ stories. And of course I will be sharing a post about the day during the month.

The Ichthyosis community is so important - for information sharing, but (in my opinion) more so because it helps people feel less alone. But having Ichthyosis is not a competition of who has it worse, whether someone is using a natural or pharmaceutical product or for resentment of others’ happiness. We all have different experiences living with the same condition, we are all doing the best we can, and competition does not help. What we all need from each other is support. And I believe that meeting each other in person will help strengthen the already supportive Australian Ichthyosis community.

Writer Elizabeth Gilbert wrote a great post on her Facebook page earlier this week. She said "Create the things you wish existed”. She encouraged us to fill the space that is missing in our lives for others - her words urging people to form communities. I found them completely fitting for Ichthyosis Awareness Month: "Out of the emptiness of despair and loneliness, you must try to create fellowship and friendship”, she wrote. And,"Out of the emptiness of division, you must try to create communion."

And I have. I wish this community existed when I was younger. I organised the meet because I want the people of our community to grow up knowing there are others out there who are facing the same challenges. I want friendship to build and flourish through peer support networks. I want families to connect and support each other. I can’t wait for next Saturday (and I also can’t wait for the sleep afterward!).

Enjoy Ichthyosis Awareness Month!

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

For support and education around living with a facial difference, visit Changing Faces and Positive Exposure.

You can read stories from 2013 and 2014's Ichthyosis Awareness Month too.

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.


Be social: follow me on Facebook, Twitter and Instagram.


5 comments:

  1. Congratulations Carly! I have loved watching you build this event for your community and you should be incredibly proud. I always knew that the girl I met on the bus on the way to ProBlogger would kick some butt! I hope May is amazing. And don't forget to stop for just a moment to take in the enormity of what you have done xx

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  2. All the best with it Carly. You have done such a great thing for your community. Bravo lady!

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  3. " At medical conferences, the patients are often exhibits. I wanted this meet to be inclusive - where patients are the stars."

    May you continue to shine brightly Carly you beautiful caring compassionate star. Your tireless activism is awe inspiring. I'm sure all will walk away from the day with a sense of joy and connection and validation like they have not experienced before. Xx

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  4. Inspiring work! Thanks for the great ideas :-) x

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