01 May 2013

Ichthyosis Awareness Month: Amplifying voices and faces through blogging.

I am so excited to introduce you to the Ichthyosis Awareness Month blog project! This project will run throughout May.

"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 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."

(Source)

Ichthyosis can also be socially challenging - people can be curious and cruel, and the condition may result in body image and esteem issues as well as stigmatising and isolation.

I am a strong believer that blogging gives people a powerful voice that is heard. Many patients and parents of children with Ichthyosis have encountered stares, comments and hurt around their condition that has sometimes scarred their confidence and quietened their voices. Additionally, it is often perceived that because of a person's visible difference, their life is less quality than someone without. I have been sharing my story of living with Ichthyosis on my blog for more three years - it's given me support networks and strong friendships, media opportunities, a thesis and a trip to speak in England. Writing about my Ichthyosis empowers me. I can share my story my way. And I wanted to give that opportunity to other people with Ichthyosis.

I invited a number 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, plus a dietician - to share their stories here. 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. I wanted them to tell their own stories free from the sensationalism and exploitation that can often be associated with raising awareness of a rare condition such as Ichthyosis.

I am proud to amplify 31 voices and faces (maybe more!) on my blog. I am moved by every guest post I received, and I have learnt so much. You will see that the symptoms, appearances and experiences differ between everyone who has shared their stories. Their stories stretch well beyond their Ichthyosis.

I can't wait to share the beautiful writing and photos with you. I encourage you to share the posts with your networks throughout the month. Together we can educate, support and celebrate this rare condition.

As a part of this blog project, I've spoken on an "It gets better" video. Because, in my experience, having Ichthyosis is difficult, especially as a youg person. But it gets better. It really does.

If you have any questions about Ichthyosis, please ask me and I'll answer them on video at the end of the month.

Thank you to everyone who has contributed to and assisted with this project.

PS: the reason I have chosen a fish logo (designed by Camille) is because Ichthyosis is derived from two Greek words meaning fish and disease.

This post is part of the Ichthyosis Awareness Month project. For all posts in this project, click here.

For Ichthyosis and appearance diversity resources, click here.

 


 

 

10 comments:

  1. Carly you rock.
    Louise, Brisbane

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  2. Carly, I think you are fabulous! I met you briefly at the Little Black Dress Project thing in Melbourne Central (I was with Teresa from BessGeorgette). Keep being wonderful and one day I would love to buy you lunch and chat.

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    1. Hey there! Thank you for the lovely message :) it was great to meet you at Cheryl's exhibition, and yes, let's do lunch :)

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  3. What an empowering message. I was glued to your little video. There is so much to learn and take forward from your wisdom and your courage. I really admire your strength, your journey. I love the little fish and I look forward to reading more heart warming stories during Ichthyosis Awareness Month xx

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    1. Hey Joesfa I really appreciate you stopping g by, watching the video and commenting. Thank you x

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  4. So nice to hear your voice Carly!

    Love your writing and look forward to reading more about ichtyosis and the experiences of others with this condition this month.

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    1. Thank you so much for reading and commenting x

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  5. Carly, wow! You really exemplify the meaning of the word patient advocate for me. As someone who has been involved in the breast cancer advocacy world for the past 9 years, I now realize that I have been so caught up in that world, I barely registered any condition or illness outside it. You have opened up my eyes today. I know our paths have crossed on Twitter but this is the first time I have really explored your blog in detail and I am so impressed. Thank you for broadening my understanding of the power of blogging outside of the narrow confines I had placed it in. Marie

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    1. Thank you for your lovely words Marie - so glad you stopped by. Looking forward to reading more about what you do too.

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