Final Stories of Ichthyosis Awareness Month: Carly and The Meet

So, we’ve come to the end of May. Here’s the start of Carly’s story and the start of her description of the Australian Ichthyosis Meet, held on the second Saturday of may. All in her own words, not mine. Also, all the stories on here have been snippets from Carly’s blog. Go over there and check out the full stories!

Ichthyosis Awareness Month – my story: “I’ve built a strong sense of resilience – both through having Ichthyosis and as an online writer.”


It’s the last day in May, and that means Ichthyosis Awareness Month comes to an end. 47 blog posts were published in May – and that’s been a great feat amongst full time work, organising the meet, participating in the Emerging Writers Festival, travel, university lecturing, freelance writing and living life (and there have been some tough things to deal with in May). I don’t do things by halves! I’m tired.

While I have not been writing for my own blog this month, I’ve been collating, editing, scheduling and promoting all of these posts (with a little editing help from three people). It’s been a huge job! You can read all of the stories here – and if you’ve got time, 2013 and 2014. Who knows what 2016 will bring?!

Read all stories in the Ichthyosis Awareness Month Blog Project here.

All about the Australian Ichthyosis Meet. So much friendship, advice and love.

Saturday 9 May was the day of the first Australian Ichthyosis Meet at the Melbourne Zoo. I have been planning it since September 2014 – and it was so wonderful to see it come into fruition after so much hard work. (The meet was open to the whole Australian Ichthyosis community – though it booked out in March.)
We had around 70 attend – and around 20 of those were affected by Ichthyosis. I started small – because it was me organising the majority of the event and I didn’t know the level of interest. But there’s a clear interest – enough for the attendees to keep in touch in a number of ways now. I also wanted it to be financially accessible and so it was no cost for attendees.

I seem to be lost for words. I cannot even describe how amazing the day was. I can’t believe it happened, and I can’t believe it happened so well! What an amazing, moving, inspiring and fun day! Thank you to everyone who came to the meet – especially the helpers. I created an event that I wanted to exist. So proud.
There was so much love for one another on that day – total respect was shown to everyone, and all of our advice and experiences were listened to. And we laughed a lot.

What we learnt at the Australian Ichthyosis meet.

Baby chaz who has ichthyosis - what we learnt at the Australian Ichthyosis meet

We learnt so much at the Australian Ichthyosis Meet. We learnt from doctors and nurses, but more importantly, from each other. I was struck by how articulate and confident the children were speaking up about what works for them and what they’d like to do next as a part of the Australian Ichthyosis community. I am mindful that we were in the safe space of a function centre at the zoo, and people revealed lots of personal things about themselves – so this is only a very small summary of what was shared.

Weekly Round-Up 4 of Ichthyosis Awareness Month

This week’s posts, all in Carly’s or their own words, not mine. As the first story illustrates, ichthyosis is more than just a skin condition. It can be more than just painful. The complications can kill. As another story illustrates, early intervention is vital.

Ichthyosis Awareness Month – Remembering Thomas. Today he would have been one year old.

This is the saddest post I’ve had to edit and publish. Today is Thomas’s birthday. He would be one year old. He passed away from infections resulting from his Ichthyosis (KID Syndrome) in December, aged six and a half months. I wrote about Thomas before I even knew his name, urging people to remember that severe skin conditions are not just cosmetic. I remember reading about the news of his death – the Ichthyosis community is so small – and feeling so sad for his parents. I got in touch with his mum Ashlee soon after. 
This beautiful baby boy is so missed and loved by his parents. I see photos of them decorating his grave – and despite the sadness, celebrating his life. They are so strong and so compassionate. 
I asked Ashlee if I could honour Thomas by publishing her story. She agreed – committed to raising further awareness about Ichthyosis in the midst of her grief. I know how difficult it was for her to write it. When I first read her story, I saw that Thomas’s birthday fell in May, and so I asked her if I could publish it today. She said yes. 
A few weeks ago Ashlee and her husband Buddy announced some wonderful news – they’re expecting a baby! I am so happy for them, and I hope the pregnancy goes well and that their new baby is born healthy.

Meet Ashlee, and remember Thomas. I hope you’ll leave a comment of love for the family. 

Ichthyosis Awareness Month – Catherine and Alfie’s story: “The online community have been a fantastic source of information and support to us when we would have been so lost.”

Today Catherine writes about her son Alfie, who turns two years old today! Happy birthday Alfie! He has Bullous Ichthyosis (also known as EHK). They live in the UK. Catherine explains the way Ichthyosis impacts on daily life, and how difficult it can be for people without the condition to understand the extent of it. She also writes about the doctors’ low expectations of people with Ichthyosis – and this proves how important it is to share our stories. I hope they read them.
Meet Catherine and Alfie. 

Ichthyosis Awareness Month: Anna and Genevieve’s story: “But most days are our silver linings.”

Anna is such an amazing mother – I really admire the way she discusses issues about Ichthyosis. She has told me of the judgment she has received about her daughter’s skin because people just don’t understand Ichthyosis. We’ve become great friends online. 

Her daughter Genevieve has Epidermolytic Hyperkeratosis.
Meet Anna and Genevieve. 

Ichthyosis Awareness Month -Callie’s Story: “My skin is on me…I am not my skin”.

Callie grew up in a small town in Canada. A blessing in disguise, as she was born with Lamellar Ichthyosis. Everyone knew who she was, there were never any questions regarding her skin. Now a university student, she has ventured out to bigger cities and has to answer the endless questions.

A 22 year old girl, whose biggest challenge is not sweating at the gym, is navigating life with her boyfriend. She is an appearance activist, who blogs at Flaws Make Life Interesting.

Meet Callie!

Ichthyosis Awareness Month – RJ’s story: “RJ is a great kid and he deals with enough physically, he should not have to deal with ignorance and rude, unkind people as well.”

Mother of five, Valerie, shares the story of her 4 year old son RJ. Fiercely protective of her little boys’ happy spirit, Valerie details the effect of daily public ignorance on her family. Valerie also explains how her and her husband had to search for their own diagnostic answers around Netherton’s Syndrome. She writes about a terrible case of discrimination that happened to her family recently.
Meet Valerie and RJ.

Ichthyosis Awareness Month – Julius’ story – “Believe that miracles happens when you least expect it.”

Here is Julius’ story, a baby born with Harlequin Ichthyosis in the town of Parang, in the province of Maguindanao, in the Philippines. The family traveled to a bigger hospital in the region to get some answers about the condition of their little boy just after he was born, but this did not assist with treatment advice. 9 months later, Julius’ story was discovered by hospital volunteers Jacquelyn and her sister, who sought assistance from FIRST, and she shares this amazing story for IAM. Julius’ mum has given us permission to share their story and pictures of her and Julius.  
This story is a serious example of why access to healthcare is so important. While the photos might be confronting, they show the severity of the condition. 
I asked Jacquelyn whether there is a fundraiser for Julius.She told me: “When I posted Julius’ condition finally he was visited by our local government unit head and help us out with the medicines and they promise to come back and raise funds for Julius.” So when I get word about a fundraiser, I will spread the word. 
I’ve cried seeing photos of his tight skin and little fused hands and feet. Keep fighting, baby Julius. And thank you for your amazing care and advocacy Jacquelyn – you’re giving a voice to this important story.

Ichthyosis Awareness Month – Becky’s story: “I realize that being normal is what I am.”

Tonight Becky tells her story of life with Lamellar Ichthyosis. It took her a long way to come to terms with her condition – and the turning point for her was Camp Discovery. I am so glad she’s stopped worrying and has made her health and happiness a priority.
Meet Becky.

Ichthyosis Awareness Month – an update on Evan. “Different is special.”

Since we last caught up with Evan and DeDe, Evan’s become a big brother! He is SO doting on baby Vince – the photos of them make my heart melt. Beautiful. 
I love seeing the progress Evan is making, and also reading DeDe’s perceptions of parenting a child with a disability. Evan has Harlequin Ichthyosis and he’s almost five years old. You can read DeDe’s blog and follow their adventures on Facebook
Say hello to some of my best friends, DeDe, Evan and Vince!
 Evan, who has Harlequin Ichthyosis,

Ichthyosis Awareness Month – Annaliese and Jossilynn’s story: “Teaching friends, family, and even sometimes doctors about Ichthyosis can be very rewarding, but also very tiring.”

Today Annaliese shares her story of being a mum to Jossilynn – a little girl with Epidermolytic Ichthyosis. I really like how she acknowledges how hard educating people about Ichthyosis is, and that she is in a good position to educate doctors about her daughter’s skin. Such an amazing advocate.  Annaliese writes that “Ichthyosis is a hard sell” – and I  get this. When you read about the severity of the condition on medical websites, it’s overwhelming, but when stories like these are shared, it can make it easier to understand for new parents. 

Meet Annaliese and Jossilyn.

Ichthyosis Awareness Month: Casey and Chaz’s story: “We see Chaz as our one in a million and we are so lucky to have him in our life.”

Last year I received an email from a dermatologist asking if he could pass on my blog to new parents of a little baby with Ichthyosis. He wrote: “I am asking firstly if you would be happy for me to direct the family to your blog. Also, your advice in managing Netherton’s is likely to be more valuable than ours and it would be beneficial to have your input.” I was flattered, and agreed – happy to pass on my experince to new families. 
A few weeks later, Casey (Chaz’s mother) and I became Facebook friends, and the family came to the Australian Ichthyosis Meet earlier this month. It was so good to meet them! Chaz is such a cutie – so cheeky!

Tonight Casey writes of the first year of having a baby with Ichthyosis. Chaz has Netherton’s Syndrome and has just turned one.
I am so glad we met – Adam and I are travelling to Ballarat to spend a day with the family soon. 
Meet Casey and Chaz.

Ichthyosis Awareness Month – Cora and Ashlynne’s story: ” At the age of 12, she is not ashamed or embarrassed of her Ichthyosis, but she is truly comfortable in her own skin.”

I’ve been following Cora’s blog for a while – I admire how she writes about coming to terms with her daughter Ashlynne’s Confetti Ichthyosis. Life has been hard for them but they’ve chosen to celebrate, to work as a team – to dance in the rain, as Cora writes. The connections Cora made has ensured Ashlynne gained confidence and is comfortable in her skin – such an important trait for a 12 year old girl. And she has a mature sense of perspective, reminding her peers of what’s important in life. I love their story.

You can send Cora and Ashlynne some good wishes on her Facebook page
Meet Cora and Ashlynne.

Ichthyosis Awareness Month – Atique’s story: “If you to start your life over knowing what you know today, what would you change?”

Atique is 24 years old and from Pakistan and has lamellar ichthyosis. Atique’s Ichthyosis has provided inspiration to study medicine – he writes about being a talented student. He hopes to research treatments for Ichthyosis.

Meet Atique.

Ichthyosis Awareness Month – Mary’s story: “The relief of finding other people with similar skin is very liberating.”

I met Mary around two years ago on my Facebook page. Mary has Ichthyosis Vulgaris. But at the time we chatted, I didn’t know it. She was friendly, joined in on lots of discussions and offered compassion and the occasional empathy about skin pain. One day, when I was in hospital, she sent me a private message, offering gentle advice about my skin – the intravenous site to be specific. I had experienced awful pain around the cannula and Mary suggested an ice bag. I thanked her, but still  I wondered how she knew so much about Ichthyosis. And so I asked her. She told me she’s in her mid 60s, a retired nurse, and she believed she might have Ichthyosis. We chatted a while longer, and soon after that, she went to the dermatologist for a diagnosis. 

I am so glad she’s found a community and knows she’s not alone. I’m glad to have played a small part in that. 
Meet Mary. 

Marching for Social Justice – Against a (Still) Unfair Budget that’s just sneakier

The budget recently delivered federally is still unfair in many ways. It’s just sneakier about it.

Consumer confidence might have bounced slightly, but I bet it’ll be a short-term improvement – before people wake up to the truth again.

Two articles (the first an excerpt, the second republished in full as it’s a call to arms):

Tony vs. the red dragon: A cautionary tale.

Tony Abbott’s had a colourful career in politics. The kind of colourful you get when you mix all of your paints together, sort of a dodgy-vindaloo brown. Whether its women doing the ironing or Jesus not wanting refugees to come to Australia, he just can’t seem to keep his foot out of his mouth (to the point where his minders should probably keep him as far away from the media as possible.) If he was ever considering a change of career I imagine that a mash-up of some of some of his more cringe worthy moments with some decent beats might be an overnight hip hop sensation. (Err nope, nope, nope.) But of all his embarrassing blunders and sleazy winks, onion eating and baby kissing, awkward silences and inappropriate weirdness, one particular comment stands out in my memory.

While campaigning with Will Hodgman in 2013, Abbott in one of his more eloquent brain farts described the Greens efforts to stop vast areas of already protected Tasmanian forests from being turned into toilet paper as “socialism masquerading as environmentalism.” One does wonder what he meant by Socialism. Did he mean “a social and economic system characterised by social ownership of the means of production and co-operative management of the economy“? Did he mean the revolutionary socialism of Che Guevera? Or did he mean “the radical idea of sharing“? It’s hard to see how any of these would make sense in the context. Then again, Abbott is not well known for making sense. Were they just some cleverly crafted words strung together to appeal to his voter base? It matters not.

Whatever confusion may have sprung from the recent budget, one thing is refreshingly clear. Abbott is adamantly not a socialist. His particular oeuvre seems to be a mix of neoclassical economics as proffered by Reagan and Thatcher, the cold war politics of the 1950s, a liberal spattering of British colonialism and a peculiar nostalgia for a time prior to women’s emancipation. Businesses create jobs. Go out and buy yourself a cappuccino machine. Unless he’s trying to create demand for imported coffee beans I really don’t see the point of this. We believe in small government, he blabbers, without thought as to who will deliver expected services or collect the taxation to fund them. We are doing what we were elected to do and that’s getting the economy back on track, he flat out lies, assuming mass ignorance of rising levels of public and private debt and cuts in spending across every portfolio. Except defence and border security, but I’ll get to that later.

The Welfare Declaration

Keith Davis reports that the March Australia NATIONAL WELFARE MARCH in July intends to do nothing less than change the social welfare landscape of this Nation. So far Brisbane, Adelaide, Perth, and a number of regional centres are joining together to march for social justice for the disadvantaged citizens of this country. This ‘peoples’ movement’ is taking square aim at the regressive social welfare policies of the Abbott Government. We believe that welfare payments are there to support the poor, the homeless, the disadvantaged, and the unemployed, and we do not believe that the rich and the corporations deserve any sort of access to tax-break welfare payments. In July, ONE MARCH can have the power to sway a Nation!” or bits of that thereof …

We Are Marching For Social Justice and Our Aims Are Very Clear. We Will Not Be Distracted From Our Cause.

We Intend to Change The Social Welfare Landscape Of This Nation!

The days of hoping for others to do it for us are over. The days of simply waiting for social justice to come our way are coming to an end.

The days of our public humiliation are about to be swept aside.

No longer will our voices be ignored. No longer will we be ground down by the poverty that has been forced upon us.

No more will we accept the judgement and demonization sent our way by the self appointed political and social upper classes of this nation.

We are taking to the streets. We are building our barricades against unfairness. We are pushing back against the tide of ridicule and suppression.

We are re-claiming our power.

We are not your serfs. We are not your servants. We will not be constrained by your oppression, your judgements, or your ridicule.

We are not animals and no more will we allow ourselves to be confined within the corrals of your Jobnetworks. We will use every means at our disposal to close down your punitive gulags.

We are not slaves. We are not convicts. We will not submit to the chains and shackles of your Work for the Dole. We will not allow you to brutally exploit our labour.

Our homeless are not scum. Our sole parents are not bludgers. Our pensioners are not invisible discards. And our disadvantaged are not blights on your social landscape.

Our unemployed are not Newstart Criminals. Our disabled are not an embarrassment. Our mental health sufferers are not cannon fodder for your funding cuts.

Our Aboriginal brothers and sisters on welfare are not targets for your quarantining experiments.

Our razor wired Asylum Seekers are not your political prisoners.

So we are taking to the streets.

So we are taking you on.

We will picket your Centrelinks.

We will force you to raise Newstart and other benefits above the poverty line.

We will demand our right to live with dignity.

We will demand a Basic Income Guarantee for all.

We will stop the unfair judgement and demonization of all Welfare Recipients.

We will demand that you withdraw welfare payments from the corporations and the rich.

We will demand that you stop attacking the poor.

So we are taking to the streets. We are building our barricades.

And to you, the Government of this land, we say this …



I, myzania3350, will be there. Will you? It’s time to take a stand. As I’ve been saying over and over: we have to make a change, we can’t wait for someone else to. Spread the word!

(Strolls off humming tune to “Do You Hear The People Sing”. Yes, yes, I know, it ended horribly for them. It’s still a bloody good song for this purpose.)

Reblogged from The AIM Network: Reflections on Trans-Pacific Nut Cases

Reflections on Trans-Pacific Nut Cases

Spending five weeks on the North American continent recently, four of them in the USA, was a great way to experience first-hand views and opinions on a variety of different subjects that penetrate the pores of the media in the land of the free.

It’s a good thing because when one observes the lunacy, ineptness and sheer bastardry of the LNP government here, seeing similar lunacy with the Republicans on the other side of the globe helps one to feel less isolated in one’s search for social sanity.

American politics, I observed, has more nut cases than we have here. But in our current political environment, I could also see that we were gaining.

They have their tea party cranks, most of whom are fire brand evangelicals who would have us believe that Barack Obama is the Beast in Revelations.

They constantly quote various but highly dubious passages of bible scripture to prove their point. I use the, ‘prove their point’ reference derogatorily.

Fox News presents the hard right wing view in such distorted terms, it redefines the concept of balance. Facts account for little. Balance is something the other side must prove rather than simply express.

The most outrageous and incredibly stupid utterances coming from the nut cases get prime time exposure with Fox which, in a way, is good because it helps to segregate and quantify that part of the collective American idiocy.

maherThen there are moderates on cable and free to air television who try to preach a more responsible, dare I say it, socialist view. One of the more enlightened on the progressive side is Bill Maher on HBO, who not only makes the hard right look like modern day Nazis, he does it with piercingly funny humour.

Beyond that humour one sees how important Maher’s role is in trying to redress the absurdity of the Tea party’s manifesto. He, however, gets only limited free to air exposure. On the more serious side, Democrat Bernie Sanders tries to show how the nut cases distort the truth but it’s a tough gig in the land of the poorly informed.

We too, have our equivalent of the Tea party. That bunch of hard right wing idealists who believe so vehemently in the market as a force for everything. Some quote dubious bible passages to prove their point too.

Our nut cases believe those who are forced off the road to wealth creation and achievement, simply don’t deserve any consideration. Fortunately, they are subjects of derision. The U.S. equivalents have ardent followers. Thankfully, we are not as gullible as the average American.

While both countries are being educated to think the world is divided into two opposing ideologies, i.e. Western capitalism and Islamic fervour, it is a contrived smokescreen created by interests of the former to distract us from Capitalism’s real opposition; those who would threaten their financial domination, their so called ‘New World Order’.

By and large, Australians just don’t buy that sort of spin, but to hear specific vague and meaningless references such as ‘death cults’ from our Chief Executive Officer makes me wonder if our resistance is weakening.

CruzNo problem with resistance over there though…the Tea party, with its evangelical claptrap and its Reaganistic mantras has captured the mind of Middle America and gets prominent air time on Fox. This forces opposing cable and free to air media to give additional airtime to issues so trivial, they appear as major news items.

Free to air networks seem somewhat confused by what their viewers want to hear and what is real. The result is broader confusion for everyone where the truth is so distorted it is lost in the mire. Truth and fact have become what one believes rather than what one knows.

Economically, the last six years of quantitative easing has rescued America from serious decline. Every argument against a sovereign monopoly issuer using its own currency to inject massive amounts of cash into its economy in times of crisis should be consigned to the scrap heap.

It has worked to restore an economy that was in free fall. It has restored America back to growth, albeit tenuously and one still not out of trouble.

That improvement, despite much of the issuance being diverted to a now seriously over valued stock market, once more demonstrates the wisdom of Labor’s stimulus program here in the wake of the GFC, where the money went straight into individual bank accounts.

Yet if you ask the man or woman in the street here, who they think is the better economic manager, they will likely say the LNP. It defies all evidence to the contrary. The recent budget, conspicuous for its lack of stimulus beyond a puny effort to win votes with the small business community, is doomed to failure. It has no answer to unemployment.

The improvement in the US economy is being attributed to Obama correctly, despite a recalcitrant Congress continuing to berate its President as someone intent on destroying the ‘American Dream’; someone better described as Satan in disguise. The right wing media hate him with a vengeance. This can only mean he has done something good for the country and something not so good for the 1%.

paulThe Republicans have already begun their campaign for the November 2016 presidential race starting in earnest well ahead of the usual time. Not to be caught napping, the Democrat hopefuls have jumped in as well. For the weary voter, it’s going to be a painfully boring 18 months.

Our 2016 political race would seem more exciting, if only to watch how our painfully dysfunctional government continues to drown in its own well recorded rhetoric and fiscal stupidity.

If ever Labor wakes from its slumber, shows true grit and challenges head-on the selfish, mean-spirited, economically inept direction the Abbott government is heading, they might win back the hordes of former true believers who have deserted them for moving too far to the right.

For me, escaping to Canada wasn’t the answer. I came back believing it was better on this side of the Pacific. We have fewer nut cases.

We Only Have One Earth

I’m fed up with a bunch of things. One being our treatment of our environment.

It’s just so frustrating – there’s only so much I can do. The Government needs to step up. I doubt that will happen with the current nutjob we have though. What will it take?

Some articles from The AIM Network, particularly by Dr Anthony Horton; he blogs on his own site – – and Keith Davis:

Spotlight on health and climate change long overdue

By Dr Anthony HortonAccording to Damian Ryan, Head of International Policy at The Climate Group there is no better time to apply a spotlight to health and climate change. Higher temperatures will either create a range of illnesses, disease or injuries or exacerbate them, at a time when ageing populations and lifestyle diseases such as diabetes and heart disease will place increasing strain on health systems around the world.

Heat waves are likely to have health impacts for significant numbers of people around the world, as evidenced by events in Western Europe in 2003 and Russia in 2009 when 80,000 and 50,000 premature deaths respectively were reported. Vulnerable poor and elderly people made up the majority of these counts.

Vector-borne diseases normally contained within temperature thresholds that contain their habitats are also likely to spread with higher temperatures. There is now evidence that malaria which is spread by the Anopheles mosquito is now present in regions that were previously regarded as too cool for the mosquito’s survival, such as the Ethiopian highlands. (more here: )

Please explain

Please explain – coal can take 5.5 years off your life in China and cost $500 billion per year in the US in health costs but it is good for Australia?By Dr Anthony Horton

Recent pronouncements by the Abbott Government that coal is good for Australia are increasingly coming under scrutiny, and if recently published findings are anything to go by, this scrutiny should continue. According to the International Edition of the Green Innovation Index, Australia had the highest coal consumption per capita on Earth, and was the 5th highest producer of coal. In terms of per capita energy use, Australia was ranked 43rd in the world, just above Saudi Arabia and Kuwait, and 45th in the world for per capita electricity use. The report also noted the repeal of the Carbon Tax in 2012 by the Senate despite being one of the world’s highest greenhouse gas emitters and having one of the highest emissions per capita in the developed world.

As I touched on in my article “Spotlight on climate change and health”, recent research has also shed light on both the direct and indirect costs of the link climate and health at the present time and not at some time in the future. A joint Chinese-United States Study has found that the air pollution created by the use of coal use has reduced average life expectancy by 5.5 years. As we all know with the term average- there must be a percentage of people whose life expectancy is reduced by more than that, which I’m sure most people would agree is a serious issue.

The research, which was a collaboration between Peking and Tsinghua Universities in Beijing and the Massachusetts Institute of Technology (MIT) looked at the impact of what was virtually an arbitrary Chinese policy. In the period 1950-1980, the Chinese Government established free winter heating for offices and homes via coal for fuel boilers as a “basic right”. Due to budgetary constraints, the program was only rolled out in Northern China which was deemed as the area bordered by the Huai River and Qinling Mountain Range. This “basic right” has resulted in significant concentrations of particles being added to the atmosphere. (more here: )

Nudge to humans from planet Earth: How many warnings do you lot need?

By Keith Davis.

“Hi Humans. Lately you may have noticed that I have accelerated the melt rate of my Antarctic Glaciers. Lately you may have noticed that I have been experimenting in my lab with the creation of even bigger and better super storms. Lately you may have noticed that I have been expanding my deserts at an ever increasing rate.

I use the term ‘may have noticed’ under decided advisement because it actually appears to me that you have taken no notice at all of my warnings. Well I am running out of patience and I am fast forming the opinion that I need to step in strongly and start protecting myself.

And I’m feeling a little crowded.

Wherever I look there is this huge mass of you human beings waddling about consuming things. Consuming food. Consuming water. Consuming my resources. And at some point there will be so many of you that you will, inevitably, arrive at a point where there will be nothing left of me to consume.

All around the world you, as a species, are gathering up every possible resource to either throw down your gobs, blow out of your exhaust pipes, or feed your insatiable greedy need to have more and more of that nihilistic human philosophy called unlimited economic growth.

Don’t you get it? You are sowing the seeds of your own destruction.

Weekly Round-Up 3 of Ichthyosis Awareness Month

Hi again. I think you know the drill by now, but: here’s this week’s round-up of stories from Carly’s blog about Ichthyosis Awareness Month. All in Carly’s/ their own words, not mine:

Ichthyosis Awareness Month – Denise’s story: “I got tired of wanting to hide.”

This post is definitely up there with one of my favourites! Denise writes about how she got tired of hiding her skin and decided to have pedicures and wear sandals. She also writes of the importance of letting go of the self consciousness, because it’s freeing. She’s let go of her personal hangups, and doesn’t worry how she might make people react to her skin – because most people aren’t worried about someone else’s skin. She’s chosen to surround herself who don’t pause when they encounter her – and that’s so valuable. Denise has Lamellar Ichthyosis and is in her 30s – married with a toddler. 
Meet Denise.

Ichthyosis Awareness Month – Nicolle’s story: “I’m looking nowhere near the age of 78 as the doctor predicted!”

I came across Nicolle online when I was featured on the Make it Look Easy Facebook page.  She commented on my photo, saying she also has Ichthyosis. Nicolle has Ichthyosis Vulgaris and lives in South Australia. 
Meet Nicolle. 

Ichthyosis Awareness Month – Brooklyn’s story – “Brooklyn isn’t the only one with Ichthyosis. We all get covered in lotion and flakes and we wouldn’t change it for normal any day.”

This post is from Brooklyn’s mum – I really like the deeply personal reflection. She writes about how disability – including Ichthyosis – has changed her way of thinking. She reveals how her life has changed for the better because of Brooklyn. She is very candid in her views about disability before Brooklyn was born – but since Brooklyn’s birth, she’s realised that disability is not a burden, and Ichthyosis is awesome. Brooklyn is 18 months and has Lamellar Ichthyosis.
Meet Brooklyn and her mother.

Ichthyosis Awareness Month: Silje and Marion’s story: “I thought I had prepared for the possibility to get a “different” child.”

Silje is a young mum from Norway. Her beautiful baby Marion was born with Epidermolytic ichthyosis. She writes of the unpreparedness and worry of having a baby with a visible difference and disability, and also the way Marion has changed her life for the better. 
Meet Silje and Marion.

Ichthyosis Awareness Month – Bree and Kristy’s story: “No matter what, she always has a smile on her face, and when she doesn’t, it doesn’t take much effort to get one out of her. “

I met Bree and her mum Kristy at the Australian Ichthyosis Meet. She’s adorable. One of my highlights was seeing Adam getting Bree to smile by making funny faces. So cute!
Kristy writes of the challenges of having a baby with Ichthyosis – the condition can cause many other complications. Bree has not yet received an official diagnosis, which I am sure makes it difficult for getting the right treatment. But the short time I spent with Bree and Kristy showed me just how happy and loved she is, and what a great job Kristy is doing.
Meet Bree and Kristy.

Ichthyosis Awareness Month – Christine’s story: “I am still just as ordinary as anyone else.”

Christine was born with Ichthyosis form Erythroderma. She is in her 50s and lives in Canada. Christine has been an incredible supporter of the Ichthyosis Awareness Month blog project – I am so grateful. She not only shares her own story, but some perspectives from her family. 

Meet Christine. 

Ichthyosis Awareness Month – Kaleigh’s story: “Life is short and I’m not going to spend it letting my condition run my life.”

I first met Kaleigh after I read her article on Yahoo about life with Netherton’s Syndrome. She writes so well – I’ve been following her work ever since. She has a great perspective on life. And such a supportive family. Meet Kaleigh.

Ichthyosis Awareness Month – Casey’s story: ” I love to answer questions, when asked respectfully and with kindness.”

This morning, Casey’s mum Kimberly sent me a message asking if I wanted to share Casey’s story. Of course I wanted to. What a beautiful girl, and what a powerful story. I really admire parents who come forward to say how tiring and ‘rage provoking’ whispers, stares and pointed fingers can be. A little girl – and adult even – should not have to put up with this. Get to know someone before making assumptions and intimidating them with stares and whispers. As Kimberly writes, ” If you happen to have the pleasure of seeing or meeting her, say Hello. I love to answer questions, when asked respectfully and with kindness.” And that goes for all of us. 
Casey is seven years old, lives in Canada and has Ichthyosis form Erythroderma. A big thanks to her Mum for asking me to publish this. 
Meet Casey.

Ichthyosis Awareness Month: Daniel’s adoption story.

Little Daniel has Harlequin Ichthyosis. When he was born, his birth mother grieved over giving birth to another child affected by Ichthyosis. Daniel’s doctors were doing the best they could to save his life, and to find him a family who could care for him. Nicole and Mark gave Daniel a new chance at life. They were willing to help him, despite knowing very little about Ichthyosis. Read their adoption story. It’s so beautiful. 
They have received some wonderful support from adults and facilities affected by Ichthyosis.

Meet Daniel and his parents Nicole and Mark. Two amazing people who has given a little boy the best chance at life.

Ichthyosis Awareness Month – Kelsey’s story: “I remember telling my younger sister once that I was part dinosaur.”

Today Kelsey tells her story. I love the perspective and humour Lamellar Ichthyosis has given her. And similar to me, she’s proved doctors wrong, showing them she can do so much more than they expected of her. 

Meet Kelsey. 

Oh no…The inevitable race to the bottom regarding asylum seekers has spread to other countries.

This is the sort of news that makes me want to swear loudly, with several curse words. Sh**, damn and f*** it!
It also makes me very sad.

For those of you who don’t know, over the weekend it came to light that hundreds – thousands – of refugees, mostly Rohingya fleeing persecution in their home country of Myanmar (which used to be known as Burma), as well as some Bangladeshis, have boarded boats and set sail for other countries, only to be turned back at their shores. Thailand. Malaysia. Indonesia. All refuse to take them in.

By the by, the Rohingya, Muslims, are one of the most persecuted ethnic groups in the world. There are 1.1 million of them in Myanmar, where they have lived for generations. However, they are stateless as Myanmar calls them “Bengalis”, implying they are immigrants from Bangladesh. Almost 140,000 were displaced in clashes with ethnic Rakhine Buddhists in 2012. (See the amnesty international website linked below for more information.)

Abbott – and his sycophants at the propaganda machine known as The Australian – have taken credit for this new policy. He said, “I don’t apologise in any way for the action that Australia has taken to preserve safety at sea by turning boats around where necessary … And if other countries choose to do that, frankly that is almost certainly absolutely necessary if the scourge of people smuggling is to be beaten.”

I am sickened by it. Populist, bigoted, thug of a man. That ^ is not the sort of words we need to hear right now. We need action. Humanitarian action, to help these people!

Just last week there were calls asking for regional dialogue – Thailand has said it will host talks in Bangkok on May 29 for 15 countries to discuss the emergency. But unless all – including Myanmar – come to the table, not much will be achieved. That’s not likely if this response from Myanmar is anything to go by: “a senior official from the president’s office said Myanmar had not received an [official] invitation for the Bangkok meeting and would not take part anyway if the word Rohingya was used“. (ABC News website, emphasis mine.)

A coordinated response from regional governments over what to do with some 2,500 migrants who have landed in Malaysia and Indonesia over the past week or some 5,000 others still stranded at sea needs to be decided. This includes Australia.

Indonesian fishermen in Aceh have been rescuing people – but the mayor says they’re running out of supplies to care for them, given the money used comes from a fund meant to help their own people. The solution cannot be to simply give them supplies and tow them to someone else’s waters (like what’s happening now with the navies of Thailand, Malaysia and Indonesia).
Malaysia’s deputy prime minister has urged Myanmar to take responsibility and look at any “humanitarian aspect for them to solve this matter internally”.
The UN has weighed in, also, saying that “the deadly pattern of migration across the Bay of Bengal would continue unless Myanmar ended discrimination”.

“The need for effective regional action to combat the crisis is clear, yet our leaders have consistently failed to act,” said Charles Santiago, chairperson of ASEAN Parliamentarians for Human Rights and a member of parliament in Malaysia. “They hide behind the arcane and ultimately destructive policy of non-interference, repeating the demonstrably false claim that the Myanmar government’s persecution of Rohingya is an ‘internal affair’,” he wrote in the Jakarta Post on Sunday.

It’s also horrifying in another fashion, for it has echoes of the past. And I’m not talking about the 80s. Some seventy years ago, a similar situation happened, with a boatload of Jews on ship called the St. Louis. It was later known as the Voyage of the Damned. The people at overland explain better than I ever could:
A bit of a stretch? Maybe. But maybe not.

I’m young and quite idealistic, I know. But this is just simple common sense. I wasn’t old enough to see/ hear the discussion in the 70s/80s. But I do know that a humane regional solution was found then. Why, why, does it have to look like this now?

It makes me sick at heart and so angry.

This is not the way to treat refugees. They’re people too. Desperate, starving, defenceless.


I think we can add, between “Jews” and “me”, “refugees”.


Sources:|SouthEastAsianMigrantCrisisIndonesiaSaysLessThanTwoWeeksFood,MedicalSuppliesLeft;PressureMountsOnMyanmarToStopExodusFromItsShores_FBP|abc (Rohingya: the most persecuted refugees in the world)

Weekly Round-Up 2 of Ichthyosis Awareness Month

The second lot of posts from Carly’s blog during May, which is Ichthyosis Awareness Month! All in Carly’s/ their own words, not mine.

Ichthyosis Awareness Month – Gina’s return: “With these challenges come with some of the most incredible experiences”.

I love showing the progress of previous Ichthyosis Awareness Month contributors. Today Gina shares her story again – she first featured in 2013. Gina has Lamellar Ichthyosis. I really like how she can see the positives that Ichthyosis has given her – the way it’s taught her to socialise, embrace diversity and identify with others with differences is uplifting – and I also feel similar. 
Say hi to Gina again. 

Gina, who has Lamellar Ichthyosis

Ichthyosis Awareness Month – Merritt’s story: “It’s nice to get compliments, but it’s also surreal. I mean where do I fit in?”

Merritt is someone I look up to. She’s a bit older than me, and she’s trailblazed treatments for her beauty regime, and mentored others younger than her. One thing I am in awe about is that she’s worked as a Disney animator! So cool 🙂
Merritt writes about her path to finding a regime that makes her comfortable, and also one of the drawbacks of having flawless skin as an Ichthyosis patient. I really admire how she’s addressed the issue of the high expectations of her having skin that’s not typical of a person with Ichthyosis.  She has Lamellar Ichthyosis
Meet Merritt.

Ichthyosis Awareness Month – Kelly’s story: “I am an Ichthyosis fighter and survivor.”

I admire this beautiful young woman’s outlook so much! Kelly has Lamellar Ichthyosis and Ichthyosis Vulgaris. She’s 19 (it’s her birthday TODAY [9/5/15]!) and she has an enormous level of self belief and courage to forgive those who have not treated her well. It saddens me that people will use God against her, especially when she has such a strong faith – such ignorance. You can wish Kelly a happy birthday on Instagram – that’s where we met! Read on to the last line – it made me smile so much. 
Meet Kelly. 

Ichthyosis Awareness Month – The Girl Behind the Face: “Life’s rarely been split between either laughter or tears; both have existed simultaneously.”

You might remember Mui’s story from 2013. She has Harlequin Ichthyosis. Her parents Rog and Tina have written a book called ‘The Girl Behind the Face’ – it’s about their incredible journey from adopting Mui to life today.  
Mui’s mother and father  have contributed to Ichthyosis Awareness Month with a piece that highlights the prejudice they’ve encountered raising a child with a rare and severe skin condition in Hong Kong. This family is so resilient and compassionate in the face of adversity. And yet they can laugh. I do hope they find a publisher soon, because their story deserves to be read widely. 

You can follow the family on Facebook, read their blog and follow Rog on Twitter. Mui also has a blog – she writes about being a referee with Ichthyosis.  They hope to come to Australia one day – I hope they do too!

Mui, who has harlequin ichthyosis, with her parents
Meet Tina, Rog and Mui.

Ichthyosis Awareness Month – Lea’s story: “A complete stranger on the street, though, is sure that he/she has the answer I’ve been looking for all my life!”

Today Lea addresses some of the assumptions made about people who look different. There’s a constant struggle among us to educate the curious, to ignore the stupid and to do it all politely. There’s an expectation that we will be polite, and if we are anything but, we are bitter, rude or ungrateful for advice. I wish that people could accept that these comments, questions and situations Lea mentions here are tiring. And bloody rude. Lea’s got sass, and I think her examples of assertiveness are good for others to use when encountering these sorts of interactions too.
Meet Lea. 
Lea, who has Ichthyosis.

Ichthyosis Awareness Month – Rebecca, Aidan and Caleb’s story: “The XLI doesn’t really bother me but people do make fun of it sometimes.”

Even though Rebecca grew up with a brother who has X-linked Ichthyosis (XLI), she was still unaware of the effect it would have on two of her sons, Aidan and Caleb. Rebecca shares her sons’ story about the daily and long-term effects of their XLI in both the physical and emotional forms.  The family is from Australia.  Aidan is a swimming champion – he’s done so well this year!

Meet Rebecca, Aidan and Caleb.

Ichthyosis Awareness Month – Andrea’s story: “I’m like a fairy scattering around stardust of my skin all the time.”

Andrea’s story made me smile. She sees the beauty and humour in an aspect of Ichthyosis that can be very difficult – shedding skin. I like her fairy and vacuum references. And like Andrea, I can’t do anything before I’ve had a shower. 
She has Ichthyosis form Erythroderma

Andrea writes of how she knows no different – she’s lived with Ichthyosis for her whole life – and that the experiences she’s had aren’t necessarily limited to those with Ichthyosis. It’s a really good perspective to have. 

Meet Andrea. 

After the Budget – A Follow-Up to Last Week’s Politics Post

Well. The budgets have been delivered. I’ll focus on the Federal.

It’s a mixed bag of stuff. I’m still not buying it. A week ago, 7:30 on the ABC showed the pollies doing their pre-budget spin tour accompanied by the song from Mary Poppins – “A Spoonful of Sugar Makes the Medicine Go Down”. That, I think, sums it up, rather. They’ve got a few spoonfuls of “sugar” (like that benefit to small business) to help the “medicine” (like further cuts to aid etc.) go down.

And now, it’s being floated as a sign of an early election? Bring it.

I’ll let others explain more….
Cutting through the crap

The Coalition want to talk about the past or the future but never the present.  Here are a few details from this year’s budget.

Net debt in 2014-15 is estimated to be $250.2 billion and the face value of CGS on issue (gross debt) is expected to reach a within‑year peak of around $370 billion.

When the Abbott Government came to power in September 2013, there was $270 billion in Commonwealth securities on issue and net debt was about $170 billion.

Far from the much touted “budget repair”, to date gross debt has grown by $100 billion and net debt by $80 billion.  Over the forward estimates, the face value of CGS on issue is projected to rise to a within‑year peak of around $539 billion in 2018‑19. Having a go

It made my heart sing last night to hear Emma Alberici tell Mathias Cormann a few home truths in one of the best interviews I have seen in recent times.

Alberici asked, if an $18 billion deficit was a “budget emergency”, what do you call a deficit of $35 billion?

Cormann launched into his “they lied” spiel which seems to miss the point entirely.  Under pressure he went for the economic security blankie, “Labor was taking Australia to a debt of $667 billion within the decade.”

Here was my hallelujah moment when Alberici replied “They were your figures. With respect that is a nonsense figure that you continue to trot out that you made up yourselves. In the PEFO (Pre-Election Economic and Fiscal Outlook) figure, which is the one you really should be referring to, it was about $370 billion.”

Cormann’s flustered response was ‘was not…did not…you leftie Labor apologist you’, or words to that effect.  He said that he didn’t “create the figure” and that “we absolutely stand by it.” Fluffy figures, flawed calculations, false expectations.

Fair, reasonable and balanced. That has been Tony Abbott’s latest pre-budget mantra, a mantra that took a hiding after Joe Hockey delivered what will surely be his final attempt at a budget last night.

Even when they are trying to save themselves, the coalition have once again demonstrated how glued they are to an ideology of trickle-down economics they can neither shake off nor hide.

If this budget were to sway one single vote it would prove the collective IQ of the nation had gone into further decline.

The small business plan will not promote a credible path to more employment. That is sheer fantasy. They think by giving small business more money, the benefits will trickle down to the unemployed.

Accelerated write offs up to $20,000 and tax cuts will give small business greater liquidity and increased profit, but no real incentive to employ additional staff.


Who the heck do they think they’re kidding?

What Are We Going To Do?

Last year, in September, I went down by train to Melbourne on a Sunday, by myself. This was slightly unusual, but it wasn’t any Sunday. It was Sunday the 21st of September 2014. I walked in the March Against Climate Change in Melbourne, as part of a crowd of thousands. It was a good day – the sun was shining, there were plenty of like-minded people to talk to. I even got to say hi to Tim Flanagan! You know, the Aussie scientist who’s done a lot of work regarding the climate and such (and who also has done a few series with that other guy, Two Men In…).

It was great. But none of us forgot why we were there. To send a damn strong message about our feelings. We. Need. Action. On Climate. NOW.

But of course, Abbott and co. are simply content to go on spending and digging….

And it might be too late before we know it.

We should pity the climate change denialists even as we work around them.
For one thing, they’re delusional fools.

But when everyone is benefiting from steps taken towards a greener future except us (, then we need to do something. For one thing, we need to keep the big polluters out of the climate talks happening soon in Paris.

Then we need to keep talking about climate change so they know we’re not going to forget.