Welcome to the 2014 Ichthyosis Awareness Month Blog Project! Once again through the whole month of May I will be featuring guest posts on this blog from people affected by Ichthyosis. There are more than 30 stories this May – from patients, parents and grandparents, partners and even a non-human! Like last year, IAM Blog Project is amplifying voices and faces through blogging. You can read last years’ Ichthyosis Awareness Month Blog Project posts here.
You can keep up with the 2014 Ichthyosis Awareness Month Blog Project here on the blog, on Facebook, Twitter and Instagram. I do hope you will share some of the stories where you can – through email, social media or even the old fashioned word of mouth. The hashtag for social media is #IchthyosisBlog14. If you’d like to contribute to a guest post this month or beyond, get in touch. Thank you so much for your support – it means the world.
Firstly, some facts:
“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. (Source)
It is pronounced “ick thee oh sis”.
It is not contagious and to date there is no cure.
Once again Camille has designed and created the logo. It’s a fish because Ichthyosis is derived from two Greek words meaning fish and disease. The heart is on the fish because I wanted this project to be surrounded with love.
I started this project in 2013 because I saw – from first hand experience and from stories from my friends in the Ichthyosis community – that people who look different are often overlooked, misjudged and not given the chance to tell their stories without sensationalism and pity. Blogging has been such a good platform for me to tell my story to ensure others get to know the real me and have my voice heard and face shown far and wide. I wanted to give others affected by Ichthyosis that same chance, in a safe and supportive space.
Last year’s contributors last year got so much out of the project. Jaime, whose story will continue tomorrow, told me “I was diagnosed with Ichthyosis Vulgaris about 3 1/2 years ago…I love what you do. You helped inspire me to come ‘forward’ into the public and actually reveal my secret. I used to be ashamed of what I have, but now I’m ready to embrace it. I hope to connect with others who have Ichthyosis too…”.
She’s not alone in her feelings. Proud grandmother Kitty said “When you asked me to be part of your IAM project, I was so honored and thrilled to share the awesomeness that is Addison and JoElla. I wanted people to know that they are just normal little girls. I am aware that putting their pictures (with their parents’ permission, of course) “out there” can be risky, but we don’t keep them sheltered. We want them to know the world and when people really take the time to know them, they will see that they are people, normal people who are full of life and want to be respected as individuals. I repeat myself by saying that education is key to their future. Knowledge is power. And I thank you, Carly, for making your blog available for empowering our little darlings”
Words like Jaime’s and Kitty’s are why I keep telling my story and sharing others’ here. And it wasn’t just people with Ichthyosis who were touched by the 2013 IAM Blog Project. People who don’t have the condition or didn’t know anything about it got so much out of it too. These stories really do raise awareness and change perceptions.
There are a few contributors returning from last year – they were excited to come back – many even asked to! Other contributors are people I met on my overseas travels. Some of the contributors to this blog project are not writers. They’re not as confident as I am in telling their story about what it’s like to live with Ichthyosis. For some, telling their story – to themselves and to the world – is like coming out. It’s a first – an admission to themselves and those around them. And they’ve been courageous enough to show their faces to the world. That’s amazing. I really appreciate all of the contributors for digging deep inside themselves to find the words. I hope you value all of their stories as much as I do.
Please note that these stories of living with Ichthyosis are based on personal experience. Some might mention treatments such as creams and skin care regimes. I encourage you to seek the guidance of a dermatologist before trying any treatments mentioned by the contributors. Similarly, if you or your child are having a difficult time coping with the social impacts of Ichthyosis, I encourage an appointment with a psychologist or counsellor.
Collating this project has been a challenge this year because I’m travelling internationally. I’ve been gone from late March, returning mid May. I’ve had access to the Internet in all places I’ve been but sometimes I’ve had to pay for it to make this project happen. I’ve forgone a night out here and there to ensure I am meeting the deadline of 1 May. I’ve spent countless hours in hotel rooms, on planes and trains reading editing, uploading words and pictures and scheduling blog posts (the time difference in each country I’ve visited has been tricky when scheduling these posts – fingers crossed for consistent posting!), creating collages, sourcing links to relevant, factual and consistent information and following up with contributors. I’ve written a prologue to each guest post, and made videos. I’ve also created an email which will go out to everyone in my contact list today. I am not sure whether I can promote each post across social media exactly on time while travelling, but I will try. It’s hard work but I wouldn’t have it any other way. I’m really proud of this.
Since last years IAM Blog Project, I’ve met – virtually and physically – many, many people with Ichthyosis. On my trip overseas so far, I’ve met Larisa, Carolyn, Mellissa, Michael, Aurora and Matthew, Kallie, Evan and Dianna (top left to bottom right). I also had an afternoon with the ladies from FIRST.
Almost all of them were contributors to the IAM Blog Project in 2013! Meeting these people has been an amazing experience – to think the thing that makes us different has brought us closer together. These people (and their parents) hosted me in their homes, travelled a great distance to meet me and have become lifelong friends. We swapped anecdotes and no matter the age difference, we learnt from each other.
The things that have struck me the most when meeting these friends are:
– the diversity of Ichthyosis types (and how similar we all look despite the wide diversity),
– the diversity of the treatments, and
– the level of importance that people place Ichthyosis in their lives.
While two people may have the same type of Ichthyosis, and look similar with similar symptoms, their severity levels may vary. They may also use different treatments and have different skin care regimes. When I stayed with Larisa (who has Netherton’s Syndrome like me), I saw that she managed her condition very different to mine. She uses less cream than me and is really fit. She copes just fine! One type of treatment doesn’t work better than another.
Meeting these wonderful people also showed me how important Ichthyosis is in their lives – if at all. (When the adults and I were together, we discussed the commonalities of the condition, but also so many more things in our lives.) It also made me think about how much a part of my identity Ichthyosis is, and how I’ve let it be that way (and I’m now proud, not ashamed). For some people it’s shaped their identity, for others, they just don’t talk about it to those who aren’t affected. It’s not a big deal in their lives and doesn’t stop them from leading active and fulfilling lives. Meeting some of the children reminded me just how hard it is growing up with a rare, medically challenging condition that makes you look different.
When I chatted to Darren Hayes in March, we talked about uniqueness. He said:
“The thing that make you unique make you a target…
The thing that makes you unique sets you apart.”
And I truly believe that. Ichthyosis (and any visible difference or disability) can make you a target. A target for bullying and exclusion, a target for being misunderstood, and the one that disappoints me the most – a target for lower expectations of a life’s worth. It is hard looking different. There is an act people like me perform. Every day we go outside and face stares and laughs and questions and comments and taunts from strangers who can only see what we look like. In addition to going about our daily life, we navigate this minefield of strangers’s questions and comments, weighing up whether they deserve an explanation about why we look the way we do. It’s tiring. It can turn us into recluses, destroy our confidence and make us feel like we’re zoo exhibits – on display, performing for the crowds. It can be very hard to keep polite.
I also believe Darren Hayes when he said the thing that makes you unique sets you apart. Ichthyosis makes us unique. It’s rare, can be very obvious, and so we are memorable. In my video, I expand on this idea.
I want to encourage you to celebrate your uniqueness. Start doing this by:
– looking in the mirror and smiling at what you see,
– smiling at strangers in the street,
– being creative to tell your story,
– being philanthropic (this doesn’t mean always giving money) – share your knowledge and experience,
– being friendly and supportive to others in similar situations,
– seeing the positives in a difficult situation (hello no body hair and a super fast metabolism thanks to Ichthyosis!),
– making a list of everything that is good about yourself and read it when you are down.
Please know that your difference is your uniqueness, it’s beauty, it originally, it’s you.
I have created a resource page that you might find useful. These include support groups, blogs and my skin care regime.
While the purpose of the Ichthyosis Awareness Month Blog Project is to raise awareness of Ichthyosis, there are some causes you can consider donating to, to help people affected by Ichthyosis:
The Foundation for Ichthyosis and Related Skin Types FIRST – they connect families affected by Ichthyosis, provide information about the condition and assist with research and support. They are also promoting Ichthyosis Awareness Month through sharing stories and running events.
Tiny Superheroes – Robyn and her team creates capes to empower children with chronic illnesses. Tiny Superheroes has done amazing things to support kids in the Ichthyosis community – I’ve got a cape and I know lots of other kids with Ichthyosis who have one too!
Positive Exposure – while not dedicated solely to Ichthyosis, Rick Guidotti takes photos of people with visible differences to showcase their beauty. Rick is speaking at the FIRST conference this year.
Changing Faces – the UK based charity that supports people with facial difference.
The Royal Children’s Hospital, Melbourne Australia – I wanted to include an Australian based cause here. While it’s based in Melbourne, the RCH helps so many sick children from across regional Victoria and country NSW. The hospital was pivotal to my dermatology care from when I was a baby until I was about 22 years old. I am a patient of the Royal Melbourne Hospital now, and see some of the doctors I saw at the Children’s growing up. The RCH is also the home of the Chronic Illness Peer Support program which I was a mentor for.