01 May 2016

Ichthyosis Awareness Month 2016 - we must move past raising awareness.


It's May and that means it's Ichthyosis Awareness Month. This isn't my usual chipper post. This is me being cynical.

From the Royal Children's Hospital website:

"Ichthyosis means 'fish scale' and is the name of a group of genetic skin diseases that cause dry, scaly, thickened skin. The condition is usually present at birth or in childhood. It is not caused by infection and is not contagious (i.e. it cannot be caught by others). The life span of someone with ichthyosis is normal. There is no known cure for ichthyosis, but there are treatments available which can help to improve the skin's condition.

Our skin has many important functions including physical protection, temperature regulation and providing a barrier to water and infection. Skin cells are the building blocks of skin and are made up of keratin.

In normal skin, new skin cells are formed in the deepest layer at the same time as dead cells are shed from the top layer of the skin. In ichthyosis, either the dead cells are shed too slowly, causing a build up of the top dry layer; or the production of new cells from the lower layers is too slow. The skin barrier is abnormal and allows too much water to be lost from the skin."

As well as the medical challenges, it's socially challenging because of other people's ignorance and fear about the condition. But you know all that. I've been banging on for it for almost six and a half years.

I'm not running Ichthyosis Awareness Month on my blog each day (twice a day) in May like I've done for the past three years. Cue sighs and protests, because I know how popular it's been. I've given the Ichthyosis Awareness Month blog project a lot of thought. And I simply can't do it in 2016 with all that has happened since last May. I'm still trying to get on top of my own Ichthyosis, which hasn't been great for more than a year now. And so I must rest.

One main reason is the sheer effort and time it takes. Editing, publishing and promoting others' stories is huge work, especially when many aren't natural writers . Last year I wrote a couple of my own posts, plus edited, published and promoted more than 40 posts from others affected by Ichthyosis (as a patient or a parent). I paid others to help edit some of the guest posts. And I tried to get as many people promoting the posts - which is tricky. Even people who submitted stories didn't promote them.That was on top of my day job, the early stages of wedding planning, organising the Australian Ichthyosis meet, and freelance writing. It broke me.

This year I am only running a couple of posts a week posts during May. There is one guest post coming that I know of, and I have a few topics lined up - more so opinion pieces than my personal story. It's such a relief not to be overwhelmed with a full calendar of guest posts. I do appreciate everyone who has submitted stories the past three years, but I can't manage a month's worth this year. I hope you understand. I'm happy to take a couple more guest posts - if you would like to submit a post, you can read the guidelines here, and I'll consider publishing it.

Here's the posts from the 2013, 2014 and 2015 Ichthyosis Awareness Month blog project. Please go back and read and share them - they empowered and educated so many. Thank you.

Another reason I'm not doing a full month of posts is because I strongly believe that we need to move past raising awareness. We need acceptance and inclusion. I know the rest of this post won't make me popular, but I back myself. I wrote a lot about the need to move past awareness last International Day of People with Disability. Me and others still experience exclusion, rudeness, stares and discrimination on a daily basis - despite awareness raising. We are expected to be teachable moments during every difficult encounter - even by people in the Ichthyosis community. I'm bloody tired.

Despite awareness raising, there's little acceptance. While I am proud I've helped to change perceptions of people with Ichthyosis (and other facial differences and disabilities), I'm also jaded. In recent months, I've received lots of messages from readers who have told me I've helped them in some way, but I still feel the message isn't reaching the people who need to hear it. I think a few others with Ichthyosis feel this way too.

Despite myself and hundreds of others raising awareness, there is still hate speech on Reddit, and stolen photos of people with Ichthyosis on Youtube and Facebook - dripping with ridicule and exploitation.

We still have to explain why we look like this, tell people we aren't contagious, and receive stares, comments and ridicule regularly. One friend, a parent of a little boy with Ichthyosis, experienced swarms of concerned people at an event asking why they let their child get so sunburnt, even calling the police. Another friend endured a nurse calling child protection because they thought she wasn't looking after her child properly. Both these friends continually raise awareness.

Raising awareness has meant parents share well meaning yet undignified photos and videos of their children with Ichthyosis. The content should be kept private. This past year I've seen some pretty horrific images and videos on Facebook including nudity, piles of skin and a screaming child in the bath. They've made me cry. This stuff belongs in the home, never to be photographed, and never on social media so others can say they've learnt something new.

I know it's with the best intentions, I know. But private groups of 700 people or more aren't private. And a public Facebook profile certainly isn't. I've been shouted down for speaking up for privacy and dignity. I wonder whether those adults without Ichthyosis doing the sharing would like their images shared in this way, in the name of awareness raising? It hurts.

Despite raising awareness, there are still uninformed, sensationalist news articles stating that Ichthyosis is caused by marriage between relatives.

Despite raising awareness, adults with Ichthyosis find it hard to get employment - because employers are scared of how their skin looks, and they underestimate abilities.

Even though those close to us are aware of our conditions, our skin can still be an inconvenience to them. They're not comfortable with our skin getting on the floor or on their clothes, and voice it. These criticisms sting, even when they're said about someone else.

Our stories are often told by others, sensationalist and exploitative as mentioned above. We need better inclusion in the media. We need inclusion across the board to prove our worth. The media culture need to stop making money from portraying our lives as tragedies.

And raising awareness can be an echo chamber. The majority of people raising awareness are those with the condition, or our family members. The shit that happens to us constantly makes us tired, and so sometimes, even we don't want to raise more awareness (I'm included in feeling like this!). I'm not sure if it's awareness fatigue, apathy or the inability to handle another issue that isn't ours, but even those with the condition don't speak up when members of the Ichthyosis community face injustice.

We need to move past raising awareness. People know we're here. We leave trails of skin like breadcrumbs. We need to get to acceptance - acceptance of our condition by others, and by ourselves.

This May, I hope for more than awareness raising and tokenism.

I hope individuals and companies take committed action to tangibly improve the lives of people with Ichthyosis.

I believe Ichthyosis charities especially need to focus on supporting the every day, rather than cures - such as offering advice about education support, helping with addressing online and offline bullying, and coaching for job seeking.

I hope more of us can meet in real life. The bonds formed are amazing.

I hope more parents can listen to adults with Ichthyosis and really respect and value our experience and advice (and so I'm thankful for the many who already do).

I hope the new generation of children with Ichthyosis learn to love themselves, speak out about their experiences, and not feel the need to conform to a beauty ideal. Above all, I hope the ableism myself and so many others have endured stops at us, and these beautiful kids never have to experience it - because society is more aware and accepting.

And on a personal note, I hope the pain of my Ichthyosis subsides a little so I don't spend so much time in bed.

Raising awareness about Ichthyosis is a start. But it's up to those without their condition to remove their prejudices and judgements about our appearence and medical needs so they can accept and include us. Over to you.





28 April 2016

Our wedding day: all the pretty dresses

It's been so much fun writing about the wedding! I can't believe it's more than a month ago. This post is the topic that everyone is asking me about - the clothes! All pictures are by Fresh Photography unless stated.

I had such an extensive wedding wardrobe! Two dresses, three jackets, two pairs of shoes and two bras! It was lots of fun to have wardrobe changes, and also kept me comfortable.

Having two dresses was extravagant but practical. Plus my first dress was on an incredible sale, and my second dress was kindly gifted.

Dress one was more bride-y than I'd ever imagined I'd wear. I bought it in June 2014 from Fairytales Bridal Boutique - Mum actually picked it out. It had six skirt layers and half a metre of tulle was cut off as I'm so short. It was adjusted with a lace up panel at the back to accommodate my bust. My lovely dressmaker altered it - I think I spent more time standing in it for fittings than wearing it on the wedding day!

I loved it - I felt like a princess!

I wore some soft gold glitter peep toe wedges for the ceremony and some of the photos, but I soon removed them and replaced them with some comfier soft gold ballet flats. My dress length was just right for both pairs of shoes. I can wear my shoes again.

In the lead up to our wedding, I was really worried about how the boning in my very bride-y dress would affect my skin. I asked married girlfriends with Ichthyosis for advice on how they kept comfortable on their big day, and also asked my dressmaker friend to make a simple jersey band to wear underneath the bodice - to avoid the synthetic fabric hurting me. I was also lucky to be given a second wedding dress from St Frock to change into, should I need to.

(Picture by Camille)

I managed to stay comfortable in my traditional dress from 1.30 - 9.00 pm. And then I wanted to be able to sit comfortably, eat dessert and dance. Oh yeah, and go to the toilet on my own! And my forearms were getting a little sore from the lack of moisture. So I layered up (with a Metalicus 3/4 sleeve top that disappointingly ran on first wear), the sequinned maxi dress and a little coatlet plus a brooch in the wedding theme colours.

This dress was made for dancing! So swishy and comfortable.

Thanks St Frock!

It's important for me to cover up and as much as I'd loved to have bare arms, it wasn't possible. I get itchy, dry, cold and sore. Plus I wouldn't have bare arms in every day life. And so I covered up with jackets.

For the ceremony, I went traditional - my big white dress and a simple lace bolero that was handmade and given to by my friend Jackie who runs clothing label M'gapi. It was so soft and comfortable to wear - beautifully made to measure.

(Picture by Sandra)

During the official photos, I put on a coloured jacket which was lots of fun! That was by a UK brand called Darling (I bought it from a shop in Yarraville that's recently closed down), and while it's not on sale in store, I saw a couple on eBay.

I promise to write more about this jacket in a future post - it really was the feature of the wedding.

And I put a winter white coatlet on with my second dress (the coatlet was from a bridal store in the city that has now shut down), and pinned the collar with a brooch from Clay and Chic on Etsy. (There's a photo of the brooch below.)

My headpiece was handmade - I found an amazing artist at the Etsy bridal fair. Ashlee Lauren, from South Australia, created a lavish headpiece for me - it fit like an Aliceband. It was rose gold, silver and crystals.

The jewellery was simple - a pearl and cubic zirconia pendant on a silver chain (from Salera's), a pearl bracelet (from Royal Pearl and Gem in Royal Arcade Melbourne CBD) and my grandmother's engagement ring - which is a blue sapphire surrounded by diamonds. I put my engagement ring on my right hand. Now I have my wedding ring, I have been wearing it on my right hand and my engagement ring on my left (my hands have been too sore and swollen to wear them both on one finger right now).

Adam wore a dark blue suit - a suede-like jacket with brown elbow patches (from Peter Jackson), suit pants (from Connor), a white shirt (also from Connor) and a cornflower blue bow tie (from Peter Jackson). He accessorised with Yoda socks (I got them from an online comic store) and a Mickey Mouse Jedi pin I bought from Paris Disneyland.

He looked so dapper! This was the first time I've seen him in a suit!

Camille made dresses for her and Cassie - they were pink and blue shantung silk. I said they could wear whatever they felt comfortable in, as long as it was in the colour scheme. The dresses were so simple and pretty, and I hope they get lots of wear out of them again. Camille did such a great job! She even made matching bags. Their jewellery was their own.

Jason told me he wore a blue blazer, a shirt with red floral pattern, pink check tie and black stripe suit.

He had Blundstone boots, undies by Bonds, and a buttoniere by Nic's Button Buds.

My mum wore an amazing black and hot pink jacquard dress from Anthea Crawford. It went perfectly with the bridal party. I loved it so much!

Dad had a white shirt, striped tie and black pants on. He was adamant he wasn't going to wear a suit... Too restrictive to dance in I guess!

Read more wedding posts here.


26 April 2016

The Dressmaker Exhibition at Ripponlea Estate.

A sponsored post brought to you by Nuffnang and the National Trust of Victoria.

Kate Winslet's costume in The Dressmaker - red structured dress, mannequin holding a football.

I was lucky enough to be invited to the opening of The Dressmaker costume exhibition at Ripponlea last week. What a beautiful, opulent experience, seeing the Parisian inspired fashions from the film.

Liam Hemsworth and Kate Winslet's costumes from The Dressmaker - dark grey suit and plum coloured dress.

I saw The Dressmaker film with my Mum last year, and loved it. Here's a bit about the film in case you need a refresher.

"Based on the best-selling novel by Rosalie Ham, The Dressmaker is a bittersweet, comedy-drama set in early 1950s Australia. Tilly Dunnage (Kate Winslet), a beautiful and talented misfit, after many years working as a dressmaker in exclusive Parisian fashion houses, returns home to the tiny middle-of-nowhere town of Dungatar to right the wrongs of the past. Not only does she reconcile with her ailing, eccentric mother Molly (Judy Davis) and unexpectedly falls in love with the pure-hearted Teddy (Liam Hemsworth), but armed with her sewing machine and incredible sense of style, she transforms the women of the town and in so doing gets sweet revenge on those who did her wrong."

Kate Winslet perfected the country Aussie accent as Tilly Dunnage, and Liam Hemsworth, who played Teddy, was quite nice to look at (especially as he was being measured for a suit!). I spent a lot of the film gasping at each beautiful costumes. So it was wonderful to see these costumes up close in person.

Three costumes from The Dressmaker, set in front of country house. Mannequin in wheelchair wearing cardigan and skirt, mannequin in ballgown and mannequin in structured dress.

The exhibition transported us back to the film - set in the 1950s, to the country town of Dungatar - the searing heat of the fields, the sweaty, rowdy football games and the glamour of a country wedding. There are 50 designs on show - worn by Kate Winslet, Sarah Snook, Rebecca Gibney, Allison Whyte and Hugo Weaving - to name just a few cast members.

Before the exhibition opened, author Rosalie Ham spoke about how pleased she was with the adaptation of her book. She said how her writing process, particularly when she created the imagery of the costumes, was a lot like a dressmaker creating the costumes.

She and a few family members played extras in the film.

Rosalie Ham said in creating the costumes in the book, she created the personality of the characters, accentuating their faults. This was clear in the film - the more over the top the dress, the less genuine and nice the personality. Tilly Dunnage, hoping to redeem her reputation, made and wore such elegant clothes. Regal even. Her wardrobe had the very integrity she was trying to prove to the people of Dungatar. Tilly also transformed the people of Dungatar with her fashions - taking them from rags to riches. Her skill was so sought after.

Marion Boyce, acclaimed dressmaker, made a short speech - thanking the crew, and making a special mention to the cast who endured the Corsetry in the heat of country Australia. Marion's favorite costume was the one above - black with chiffon pleated sleeves. I loved it too, Marion.

It's easy to see why Marion has won so many awards for her costume design - the level of artisanship and detail is spectacular. The ballgown Gertrude (played by Sarah Snook) wore is encrusted in beads, so delicate and beautiful.

One of my favourite parts of the exhibition what the video explaining how Molly Dunnage's (played by Judy Davis) old sweat stained, well worn clothing was made. There was a room full of her clothes - they certainly didn't smell like I expected them to!

Another highlight for me was Tilly's sewing room - filled with fabrics, a feather boa and a dressmakers dummy. I loved the image of Tilly sewing. It made me feel I was on the film set.

There was glorious millinery.
This was my favourite style. Stunning.
And this was my favourite colour.
I wore my wedding jacket to this special event. I felt so chic among the wedding party.

There's so much more I could show you, but you really should see it yourself. I can't wait to go again with my mum and friends.

The Dressmaker exhibition is held at Ripponlea Estate, Elsternwick until 31 July. For more information, visit The Dressmaker website.

















24 April 2016

Our wedding day: official photography by Fresh Photography


Our official wedding photographers have just sent us through all photos of our special day. There are so many to choose from, so here are just a few. Husband and wife team Souri and Andreas from Fresh Photography captured the emotions of the day perfectly. I love seeing everyone so happy – dancing and laughing. As I looked through them, I had tears.

Our wedding took place in Balaclava, so the photography locations were urban – think house fronts, trams and street art, and of course our wonderful venue. There was lots of interesting street art around Red Scooter, which added a pop of colour to the photos. The photography session between the ceremony and reception was a lot of fun for us (and we hope fun for our guests – they mingled and drank at the bar).


I first met Souri and Andreas from Fresh Photography at the Kidspot Voices of 2014 event – Souri blogs at Fabulous Femme and she was one of the winners of the beauty awards. She wrote about that here. It was really good to have seen Andreas in action at the awards night, and to have a reference point through their blogs. I remember looking at their portfolio online with Adam, inspired by the unique photo style, and saying to Adam "they're the ones we want to work with on our wedding day"

Isn't it brilliant how blogging brings people together?!


Souri was so calming, and Andreas was lively during the reception. They put us at ease from our first meeting and of course on the day, and I know we will stay friends.

Souri and Andreas donated the fee for our wedding to charities that are meaningful to them. So lovely. I cannot recommend Souri and Andreas enough.

See lots of Fresh Photography’s photos from our day on their blog.



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