A reblog: Brains are amazing.

Check out the following. I enjoyed it and related to it. Brains are amazing

This week has been good – first week back of term and of choir rehearsals too, getting into the routine again.

It’s also signalled the likely death of my laptop. The screen went kaput at work, so I’ll be working out of the resource room for a while until I get a new one.

Tomorrow marks fifty years since humans first walked on the moon. I think that’s awesome. I’ve always been fascinated by the stars and outer space.

Refugees, Education and Activism

On Monday, VCE results came out. Among all the stories of achievement there were a few interesting ones. Like the one about Saad Al-Kassab. A Syrian refugee who came to Australia two years ago and has only learnt English in that time, he has graduated as dux of his class, with an ATAR of 96.65. Way to go, mate!

Recently, the topic of refugees and education has reared its head in a different form. Check out this article – the group Teachers for Refugees is standing up for those in detention by wearing t-shirts with slogans in their classrooms this week. Naturally, the government aren’t happy, saying silly things like “politics doesn’t belong in the classroom”. As the article says, of course politics belongs in the classroom – how else are students supposed to engage with history and current events? They have a right to speak their minds about the hell in detention (and to protest against the Border Force Act that stops them). Our treatment of asylum seekers is shameful.

If we gave them a chance and brought them here, imagine how life could be. Saad Al-Kassab started off in Australia working as the school’s gardener and after a few months got into the classroom. He now wants to go and study medicine. I wish good things for him and his future and hope that others will get the opportunities he’s received soon.


PiF: The kindergarten and the nursing home


“A Melbourne kindergarten’s fortnightly play dates with a group of dementia sufferers is proving age is no barrier when it comes to developing friendships and a sense of community.”

In Abbotsford, a suburb of Melbourne, a nursing home and a kindergarten are next-door to each other. So an idea developed for the children to visit the elderly residents, many of whom have dementia. The visits were so successful that they’re now a fortnightly event. 🙂

Why Are We So Afraid of Another’s Culture – and why do we have to be so immature about it?

Fiona Katauskas' cartoon 'The Goodes, the Bad and the Ugly' portrays various situations of Aboriginal people being victimised then being blamed for acting like victims
(Fiona Katauskas |  04 August 2015: http://www.eurekastreet.com.au/article.aspx?aeid=45125#.VcHPKPmqpBd)

I’m talking of course about the problem a lot of people seem to have with Adam Goodes and how proud he is of being Indigenous. They also dislike how willing he is to call them on their bulls—.

Look, I know some of those booing him may well have done so because they think he’s a tosser or whatever generally. But the fact remains that many of those booing do so for racist reasons, whether they admit that or not. Also, due to past circumstances – related to how proud he is about his culture – Adam Goodes feels the sting of those boos as racism. In these situations, I believe it is the feelings of the injured party rather than the perpetrators which need to be honoured. He says he feels it’s racist – so it should be treated as such.

I stand with Adam Goodes because I feel that he has a point. Australia has a shallow underbelly full of racists – usually white middle-class men who need to check their privilege. It’s not just Goodes and Indigenous people who are being swiped at either: Muslims and refugees and others too. The government aren’t exactly helping, either.

These racist white men (and some women, to be fair) think that other people should all be “just like us” and everyone who isn’t – who dares to belong to a different culture and is proud about their heritage – well, that’s just unacceptable. The “offender” is classed as Other, treated as Them, who are Not-Like-Us.

These people need a reality check – like those who go on that SBS show, Go Back To Where You Came From. Remember, it’s cultural relativism not ethnocentrism that we need.
Of course, some are too set in their ways to change, which is a pity. That doesn’t mean we shouldn’t call them on it – it means we should call louder. Discussion is always good and who knows, we might convince the person sitting next to them.

I am sorry, but while I value free speech, I do believe that there needs to be acknowledgement that completely “uncensored” free speech can be hurtful and detrimental to society. As I’ve said before, it’s one thing to be a bigot; it’s quite another to discriminate or harrass someone based on our own narrow-mindedness.

Do we really want this sort of thing to be something we’re known for, for instance? I say, heck no!

By the way, casual “accidental” racism is still racism, in part because it masks the more sinister, vitriol-spewing type. So think before you speak or boo, yeah? Don’t be afraid either to call out the ignorant ones, even if that’s just reporting them to security or whatever. That’s the only way we’ll get the chance to shut them up. We want to create a society, surely, that builds up others – not breaks them down.

Think about it.

References from others more eloquent than I:
The Age articles, especially from Saturday’s great issue with its wrap-around support banner.

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.http://theaimn.com/tony-v-the-red-dragon-a-cautionary-tale/

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.)

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.