MEDIA RELEASE: Australia's first national Ichthyosis meet. (Peer support meet comes to life at Melbourne Zoo in May)

MEDIA RELEASE

30 April 2015

Peer support meet comes to life at Melbourne Zoo in May

Appearance activist Carly Findlay, in partnership with the Genetic Support Network of Victoria (GSNV), will host the first official Australian Ichthyosis Meet in Melbourne on Saturday 9 May 2015, as part of Ichthyosis Awareness Month.

This event gives adults, children and families affected by Ichthyosis the chance to meet others with this rare skin condition which affects an estimated ten to twenty people in a million.

With 74 people registered to attend, including 23 who have Ichthyosis, the event has certainly been wells-received. One attendee, nine-year old Lucia, is particularly looking forward to the meet because 'it will feel awesome to be in a room with no-one staring at me'.

The organiser, Carly Findlay, explains that because Ichthyosis is such a rare condition, many people who are affected have never met anyone else who could truly understand their condition. Carly herself, as a child, hadn't met anyone else with the rare, severe genetic skin condition. 'I thought I was all alone', said Carly. Her hope is that through attending this first-ever Australian event, friendships will form and self-confidence will grow among attendees.

'People with rare conditions need social support from peers' said Carly. Peer support, through opportunities such as the Australian Ichthyosis Meet, is known to have positive effects on the health of those involved by reducing feelings of isolation and depression, improving their sense of wellbeing, and improving coping skills and behaviours.

For another attendee, 11-year old Alexander, the Australian Ichthyosis Meet is a dream come true. 'Mum has always talked about going to the United States to a conference but now we get to have one here in Australia. I will be able to ask them questions and maybe even help others by sharing how I take care of myself. I would like to ask them how they deal with people’s stares and what it's [going to be] like when I grow up', said Alexander.

The one-day event, to be held at the Melbourne Zoo, includes an informal meet and greet, time to explore the zoo as a group, and dinner. Dermatologists Professor Ingrid Winship and Dr David Orchard will also attend.

Visit carlyfindlay.blogspot.com for updates and more information before and after the event.

Media contact: Carly Findlay

Further reading: Systematic review of peer-support programs for people with cancer. Hoey LM et al. Patient Educ Couns 2008 Mar; 70(3): 315-37 (http://www.ncbi.nlm.nih.gov/pubmed/18191527)

- ends - 

BACKGROUND

What is Ichthyosis?

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

About the organisers

Carly Findlay

Carly Findlay is a Melbourne-based writer, speaker and appearance activist. In 2014 Carly was named as one of Australia's 100 Women of Influence by Westpac and the Australian Financial Review.

Carly is an established online writer, winning several awards for freelance writing and blogging. She shares her story about what it's like to look different, and connects people with Ichthyosis and other visible differences through her activism. She lives a great life with Ichthyosis – enjoying travelling, seeing live music and exploring activism and support for chronic illnesses through social media. She has run the Ichthyosis Awareness Month blog project in May 2013 and 2014 - giving people affected by Ichthyosis a chance to tell their story on her blog. Carly has a Master in Communication. She blogs at carlyfindlay.blogspot.com.

Genetic Support Network of Victoria

The Genetic Support Network Victoria (GSNV) is a vibrant and active organisation committed to promoting the interests and well-being of people affected by genetic conditions. The Network is proud to be associated with a wide range of support groups throughout Victoria and Australia as well as peak professional bodies such as Victorian Clinical Genetics Services.

Assisting individuals and families with the 'human', non clinical side of genetic diagnosis is common place in the day to day activity of GSNV. This includes assisting people with access to services, connecting with others, education, advocacy, support and information. Visit gsnv.org.au for more information.

The wind beneath my wings

 

One Saturday night earlier this month, Adam and I went to his parents’ house for dinner. My mum was there too. Our mothers are around the same age and have similar music tastes - Creedence Clearwater Revival, Lionel Ritchie, Janis Joplin, Joni Mitchell. His mum played Bette Midler’s Wind Beneath My Wings - which I came to know through Beaches, which I’ve watched many times since I was nine years old. I dramatically serenaded Adam (twice), moving my arms to simulate wings, and pointing at him during the "you, you, you’s”. Pretty sure he had cold feet about our wedding! Just kidding. It’s still happening.

I listened to the song again the next day, taking in the lyrics:

"It might have appeared to go unnoticed, but I've got it all here in my heart.

I want you to know I know the truth, of course I know it.

I would be nothing without you."

And it occurred to me that Adam is indeed the wind beneath my wings.Not in the "walking a step behind" me way that Bette sings about. But in the supportive way. Because we walk together.

And I don’t want him to be the beautiful face without a name - I want everyone to know his name and how wonderful he is (well, as much as he is comfortable with - I never want to compromise his integrity or privacy online, and always ask him permission to post or run updates and blog drafts by him). When we were at Layne Beachley’s fundraiser last month, she introduced herself to him, saying she knew who he is as he’s famous on the internet, and he looked so chuffed.

Before I’d even met Adam, I wondered how I’d have time to have a boyfriend. When would I fit it all in? How could I do all the things I wanted to and commit to a lover? I was Miss Independent.

But pretty soon, I found out I can have it both - a loving, busy relationship and my independence. And looking back on these almost 18 months, I’ve managed to do so much - buoyed by Adam. I am thankful.

Now, I am busier than ever. I attribute my achievements to his love and support. While I put in the work - writing and preparing and promoting and talking - he gives me the time and confidence to do this.

This man is the most supportive, interested, generous, proud partner I could ever wish for. As I write this, he’s given up his Sunday to make a chalkboard for the Ichthyosis meet. He comes to see me talk and gets involved in things that I do. Last month he drove me on a three hour round trip on a weeknight so I could speak at an event. He came to the event - the only man among 30 women - mingling and laughing along. Amazing.

I hope that I’m as equally supportive and nurturing of him. I try. Every day I see something more to love about him. He’s come out of his shell so much - his confidence is soaring. I am so proud of him.

We were talking about the good things we in our relationship. We agreed that one of the best things about it is being able to be ourselves, with each other's support. I honestly think we've found each other which has meant finding ourselves.

 

One plus four equals life - sickness, rest, donations and a party.

Hello! Happy Saturday. I've been awake since 3.30 am as I drove Adam into the ANZAC Day service - and later I'll go with him to check out the poppies in the city. It's time for one plus four equals life again - it's a great way to reflect on the week.

I've been unwell this week - just a cold - but enough to stop me and make me realise I must rest. I'm allergic to cold and flu tablets so it's been lemon and honey and brandy, and chicken soup for healing. I had Wednesday off work and spent the whole day in bed watching movies. I felt so rested. And now my cold is nearly gone.

Things are coming together so well for the Australian Ichthyosis meet. I've been seriously busy with preparation. Every day a new package (or seven!) arrives, filled with giveaways for the guests. My living room is stacked with boxes of stuff. These bags will hold those giveaways - they were generously donated by Brad from Your Name Here Promos. If you want to donate, you can still do so here. I am overwhelmed with how generous people and companies have been - thank you everyone!

We spent some time at a craft market on Sunday, and on the walk there, I admired the autumn colours. Aren't these colours just beautiful?

Last night was Camille's birthday party - my second party of the night! We celebrated at a luxe bar - I was so happy to be sitting near a fire place.

Finally, it's ANZAC day today - I shared something about it on my Facebook Page. Lest we forget - not just those who served 100 years ago, but those affected by present day wars.

I hope your day is good, whatever you're doing.

Ps: If you've come here from The Mighty, thank you! Here's more info on Ichthyosis. Be sure to follow me on Facebook and Twitter.

 

Three tips for exploring museums and art galleries.

I went to some amazing museums and galleries in Milan and Paris, and a few in the UK too. The history they hold is breath-taking. I loved learning about how people lived, and seeing iconic artwork. It's also interesting seeing how others take it all in - lingering looking, or quick photo snaps to look at later. How lucky was I to absorb such culture and history!

I saw The Duomo in Milan – dating back to the 1300s. How the heck did they build such an enormous, detailed building with the technology at the time?!

I loved that there was a small fee for taking photos - an honesty fee. I think it was two euro - and the staff wanted visitors to take photos and share them.

 As I took this photo, about 50 others stood before the window taking the same photo.

I went to the National Museum of Science and Technology: Leonardo Da Vinci in Milan – filled with planes, ships and cartography. I was in awe of how innovative inventors and designers were centuries ago and also how technology has progressed.  There were some great displays of modern technology that was very hands-on for kids.

I also toured The Louvre (huge!), Musee de l’Orangerie (beautiful paintings by Monet), and the Fragonard Perfume Museum in Paris. I think I saw the museums of music and ballet too, but only went to the ballet gift shop. 

Selfie with Mona Lisa.

 It was Tuesday afternoon at the Louvre and it was so busy!

 Surprisingly, the perform museum didn't smell as amazing as I imagined.

No photos allowed inside Orangerie - a pity because it was filled with Monet. Amazing.

And on my most recent trip to the UK, I visited Inveraray Castle in Scotland, the outside of the Tower of London, the Victoria and Albert Museum and Cardiff Museum in Wales. There may well have been others but I was feeling pretty unwell in London and Cardiff.

I was SO amazed at the beauty of this castle. It's huge and so detailed. I wanted to go inside. I think Downton Abbey is filmed there.

 A friend and I sat outside the Tower of London. In hindsight I should have gone inside!

No photos allowed inside the Victoria and Albert Museum. Maggie and I asked a stranger to take this one outside.

The European museums and galleries were definitely more populated than the ones I visited in the USA. 

Here's what I learnt:

Book ahead online to avoid queues

I queued for almost an hour in Milan and Paris – one time I queued longer than I spent looking at the art! There were often two queues – one for prepared people who booked ahead, and one for people who just turned up. The first queue moved very fast and I was envious! I will book ahead every time now. 

I also recommend that you take water and a hat – it can be really hot waiting in a queue, no matter how long you have to wait! I waited for ages in Milan and think I got sunburnt!

Also, if you don't book online, at least check the price before you go. I didn't end up going inside the Tower of London due to the price! (I'd rather see a show on West End!)

You can’t see everything at once.
I was amazed with how big the museums and galleries were! The Louvre was huge! (It’s over 60,600. And they are very busy and crowded – many are top tourist destinations. And so it was impossible to see everything in a limited time. 

When you book your ticket online, check out how big the museum or gallery is, look at the exhibitions and plan what you want to see before you go. Collect a map at the entry (or print one before you go) and mark your route. And if you don’t see everything you want to see on your first visit, it’s a great reason to return! (And museum and gallery exhibitions change – so you might be lucky and see something you missed out at a later date in your hometown!)

Save your money for the gift shops.

I measure the quality and my enjoyment of a museum or gallery on the gift shop! If it’s stocked with amazing art and craft, I am happy! You can often get replica prints in frames or on cards, magnets or scarves from gift shops. And they stock an amazing range of jewellery – which never weighs much in your suitcase on the trip home. 

(I bought a cute brooch from the V&A giftshop – online though. It's a design by Cilea. 

I thought I’d run out of money close to the end of my trip. The postage was a killer, but I love this brooch so much. 

I bought a cute pressed flower necklace at the castle in Scotland, and some gifts in the museum in Cardiff. 

When I was in Chicago, I found a gorgeous mosaic plate that was a bargain – though it was too big and fragile to carry around the world with me (or post home) so I do hope it found an appreciative owner.

Have you got any advice?

Bought anything special from a museum or gallery store?

The standard we walk past is the standard we accept. On attitudes and allies towards disability.

This past month I've become involved in a number of heated online discussions around disability, equality and ableism. The conversations were around the use of accessible toilets by people without disabilities and the ableism shown towards a prominent disabled Australian by a media personality on a TV program. I conversed (and face-palmed) with people with disabilities and without.

(In one instance I was called a 'judgemental piece of work' - I'm proud of that because I stood my ground on accessibility issues when no one else in the conversation believed that accessible toilets are priority for people with disabilities. I used factual, calm language and didn't resort to name calling. A friend told me that I get proud by laughing off those insults - the insults that are used when they realise their behaviour is wrong. I am proud to be an activist.)

In both conversations I was told (by people without disabilities) that there are bigger issues to worry about. (I agree, there are bigger issues relating to disability - employment, pensions, abusers in care, sheltered workshops, education and the list goes on. But these so called smaller issues impact on our days.) These bigger issues weren't named in the conversations - but I wonder if bigger issues relating to disability came to their minds, or whether they were issues that weren't specific to disability? And while in isolation, these issues may seem small, these are the issued faced by 20 percent of the Australian community on a daily basis. I see the dismissing of these issues as another barrier to disability.

The attitudinal barriers towards disability are as limiting as the physical barriers. If we keep saying there are more important issues than a disabled person's right to use an accessible toilet or how we use language about or towards people with disabilities, or ridiculing disability on TV, attitudes towards disability won't change.

The standard we walk past is the standard we accept. 

It's rare that there wouldn't be a level of outrage about someone publicly ridiculing another's race or sexuality in 2015 so why should disability be a lesser issue? Why should we shut up about this?

The more I talk about disability issues, the more I realise the attitudinal barriers towards disability are  still so present. There's such a blasé attitude. It doesn't affect them...it won't happen to them...try telling a child to wait for a disabled toilet...disabled people are other... no disrespect but... And frankly, I'm tired of non disabled people deciding what's offensive, and what access requirements and issues are important. Sure, have input into conversations, ask for advice, but don't tell us our issues aren't important enough to be voiced and progressed for change. Because that contributes to inaccessibility.

These conversations I had recently weren't about the issues that I face. And I haven't always been aware of all the issues the disability community faces - it's through getting to know people and research that I've discovered them. I don't use accessible toilets unless I need to wash my face in transit. And I haven't been mocked on national TV. But they're issues for my friends - for my community - and so I take ownership and responsibility for them. I've become an ally, even when I'm in the disability community. We need allies to progress disability issues - to show the wider community that disability issues need to be spoken about and supported, and is nothing to be ridiculed or feared.

As writer and disability ally Clementine Ford wrote for The Age, 

“It's time the status quo starts declaring our solidarity with our disabled peers, colleagues, fellow Australians, children, elderly, family members and citizens, all of whom have been saying this for far too long with too little response.” 

We need to work together to create change, and we need to start with these smaller issues. We can't accept them, overlook them or dismiss them as too small to address. It's up to all of us. Because we're not there yet.

Coming up: Ichthyosis Awareness Month 2015

I have spent the weekend editing and scheduling stories for Ichthyosis Awareness Month 2015 - it begins next week! I've already received a heap of stories to share. The whole month of May will be dedicated to raising awareness about the rare, severe skin condition Ichthyosis on this blog. It's such a privilege to have people write about their experiences.

There are great stories of resilience, life change and hope, and you'll see the progress that past contributors have made.

Thank you to everyone who has contributed so far, and who has shared previous years' stories. You can read last year's series here. Get excited for 1 May!

(My cute logo is by Camille)

 

One plus four equals life. Midweek travel and media.

It's Saturday! And I'm doing Pip's One plus four = life again. This is SO going to be a regular thing! I've been waiting for Saturday to roll around again because t's been such a busy week, and I've been sore. And there's also so much to do for Ichthyosis Awareness Month (IAM) and the Ichthyosis meet. I'm quite nervous about getting it all done, really.

Today I am off to a craft market, will grab some groceries then settle on the couch for a big editing and uploading session - so many stories for IAM have come in and I'm thankful and excited. But here's a really good tip - even if you aren't a natural writer, take pride in what you contribute for guest blog posts. Be punctual, run spell check and supply all photos you'd like used yourself - it's a huge job for the hosting blogger!

Mum was down last week, though I only got to see her on Saturday. It was a busy day, but great to see her - I wish I could see her more. She bought me an amazing red leather jacket she sourced at the opshop - I am very lucky!

I flew to Canberra mid week and seriously could not stop taking photos of the view from my balcony. How pretty is it?! This was the sunset:

And this was the sunrise. Beautiful.

I had a nice time in Canberra, despite being sore - it was good to meet people I work with in person. And after a hectic load of writing earlier in the week, it was nice to use the plane trip and hotel stay just to rest, read and listen to podcasts! I discovered NPR's Snap Judgment - last week's episode featured a story about kids' dermatology camp, and the hierarchy of severity. Difficult to hear, but worth a listen.

Finally, it's been a week of exciting, global media for me! I've had a little thing about finding my tribe republished on ABC Open. And I've been in the Danish and Italian media since I wrote about the Mirror and Huffington Post. On one hand - it's exciting to be featured and for publications to link back to my blog, but I do wish they'd ask permission!

How's your week been?

 

Travel tales: Degas House, New Orleans

It’s just over a year ago since I was in New Orleans. Gosh time has flown! I want to blog more about my trip – let’s hope I can remember the details! I saw so much.

I went on a guided bus tour in New Orleans – it changed my perspective of the city. I loved doing these short tours as it gave me ideas for what I wanted to see later.

As the tour bus was going up The Esplanade in New Orleans, the guide pointed out French artist Edgar Degas' house, which is now art gallery for the public to visit.

I was so excited, because studied Degas at school and also saw a few of his works at the MET in NYC in 2012.

And so after the bus tour, I walked – many, many blocks to the Degas House. It was hot and so by the time I arrived, I was redder than usual and in need of a cold drink. The staff – Degas’ relatives – were very welcoming. And I learnt so much during my two hours there.

Degas House is located at 2306 The Esplanade - on the corner of North Tonti Street New Orleans. There are two houses on this block - they make up a gallery and bed and breakfast. The two houses were once one large mansion but in the 1920s, the house was cut in two.

Edgar Degas had Creole heritage. He went to New Orleans to live with his uncle in the house at The Esplanade in 1872. He was provided with a bedroom which doubled as his studio.

At the time New Orleans was in a depression, and perhaps Degas was too. He had an eye condition. He would paint his cousins, depicting looking introspectively - their eyes looking at nothing in particular. This was thought to be a symbol of his own fate for his sight.

New Orleans has brilliant, bright light. To protect his eyesight from the light, Degas painted all of his New Orleans portraits at the house.

His five months in New Orleans was where he found himself – an awakening of sorts. He returned to Paris in 1873 to create the paintings we are familiar with.

Today, Degas House is a guest house - adorned with Degas' paintings and decorated to reflect the period in which Degas stayed in the house. It is so beautiful – gorgeous 19th century furniture, low ceilings and artwork everywhere. There is a sunny courtyard – a little eerie after seeing a painting he did.

His studio is not a guest room. It has his wardrobe and bed. A palette with dried paint sits on a desk. Chairs are arranged to show the way he would have studied his subjects while painting them. The room is the brightest lit of both houses.

From memory, the tour cost $15 plus tax and tip (I had a student card). There was no one else there when I went, so I explored the house uninterrupted.

If you’re in New Orleans, Degas House is well worth a visit. It'd make a lovely, romantic stay.