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. 
http://carlyfindlay.blogspot.com.au/2015/05/ichthyosis-awareness-month-my-story-ive.html?utm_source=feedburner&utm_medium=email&utm_campaign=Feed:+TuneIntoRadioCarly+(Tune+into+Radio+Carly)

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.

http://carlyfindlay.blogspot.com.au/2015/05/what-we-learnt-at-australian-ichthyosis.html?utm_source=feedburner&utm_medium=email&utm_campaign=Feed:+TuneIntoRadioCarly+(Tune+into+Radio+Carly)

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.

http://carlyfindlay.blogspot.com.au/2015/05/ichthyosis-awareness-month-beckys-story.html?utm_source=feedburner&utm_medium=email&utm_campaign=Feed:+TuneIntoRadioCarly+(Tune+into+Radio+Carly)

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,
 http://carlyfindlay.blogspot.com.au/2015/05/ichthyosis-awareness-month-update-on.html?utm_source=feedburner&utm_medium=email&utm_campaign=Feed:+TuneIntoRadioCarly+(Tune+into+Radio+Carly)

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. 

 http://carlyfindlay.blogspot.com.au/2015/05/ichthyosis-awareness-month-annaliese.html?utm_source=feedburner&utm_medium=email&utm_campaign=Feed:+TuneIntoRadioCarly+(Tune+into+Radio+Carly)

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.

http://carlyfindlay.blogspot.com.au/2015/05/ichthyosis-awareness-month-casey-and.html?utm_source=feedburner&utm_medium=email&utm_campaign=Feed:+TuneIntoRadioCarly+(Tune+into+Radio+Carly)

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. 
 
 http://carlyfindlay.blogspot.com.au/2015/05/ichthyosis-awareness-month-cora-and.html?utm_source=feedburner&utm_medium=email&utm_campaign=Feed:+TuneIntoRadioCarly+(Tune+into+Radio+Carly)

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. 

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.

http://carlyfindlay.blogspot.com.au/2015/05/ichthyosis-awareness-month-brooklyns.html?utm_source=feedburner&utm_medium=email&utm_campaign=Feed:+TuneIntoRadioCarly+(Tune+into+Radio+Carly)

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. 

http://carlyfindlay.blogspot.com.au/2015/05/ichthyosis-awareness-month-silje-and.html?utm_source=feedburner&utm_medium=email&utm_campaign=Feed:+TuneIntoRadioCarly+(Tune+into+Radio+Carly)

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.

http://carlyfindlay.blogspot.com.au/2015/05/ichthyosis-awareness-month-bree-and.html?utm_source=feedburner&utm_medium=email&utm_campaign=Feed:+TuneIntoRadioCarly+(Tune+into+Radio+Carly)

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.

http://carlyfindlay.blogspot.com.au/2015/05/ichthyosis-awareness-month-kaleighs.html?utm_source=feedburner&utm_medium=email&utm_campaign=Feed:+TuneIntoRadioCarly+(Tune+into+Radio+Carly)

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. 

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. 

Weekly Round-Up 1 of Ichthyosis Awareness Month

The stories on Carly’s blog this week, all in either Carly’s or their own words, not mine:

Ichthyosis Awareness Month – Alexander and Maria’s stories: “I try to ignore these comments and stares but it makes me sad, and I feel so different.”

A mother and son share their stories today. They’re coming to the Australian Ichthyosis Meet on Saturday – and both Alexander and Maria are looking forward to making new connections. 

Their stories reiterate the need for connections with other patients and families affected by the condition, and for simple, accessible information about the condition.  I am so glad they will have that experience very soon! Alexander has Netherton’s Syndrome.

Ichthyosis Awareness Month – Steph’s Story: “Your life is what you make it.”

I am so excited to share Stephanie’s story for Ichthyosis Awareness Month 2015! I’ve been her online friend for years, and it’s been a delight following her journey. She’s given hope to so many patients and parents. Steph’s got Harlequin Ichthyosis – the most severe form. I first wrote about her when she gave birth to her first child, and late last year, she gave birth to her second – a little girl.  She’s the first known case of a patient with Harlequin Ichthyosis to give birth – which is a huge milestone! The reality of me having a family has become clearer, and I’ve certainly looked to Steph for reassurance that it can be done.
I really like what Steph writes here – we think along the same lines and have reached the same level of acceptance of our condition. I posted a link to a story about a potential cure for the type of Ichthyosis I have, and here’s how she responded, which led me to ask her to expand on her thoughts for this blog post:

“As crazy as it may sound- I have Harlequin Ichthyosis & I wouldn’t change a thing. It’s made me who I am today. It’s made me more accepting of others, stronger & able to laugh at life frequently (sometimes the choices are to laugh or cry).. Sure I have no idea what it’s like to live without H.I but I would never want to. It’d make life easier but that’s why God made people with Ichthyosis tough as nails! I could see why a parent may find it pretty interesting though! I’ve learned that being a mommy, you’re ALWAYS trying to help your baby avoid pain or any struggles that can be avoided.”


You can read Steph’s old blog and her new blog and chat with her on Twitter

Ichthyosis Awareness Month – Ciara and Eleanor’s stories: “People are so shocked that someone so different can do something so amazing.”

Today a mother and daughter share their stories for Ichthyosis Awareness Month. Ciara and Eleanor live in Western Australia and are coming to the Australian Ichthyosis Meet this Saturday – I can’t wait to meet them! Ciara is 14 and she has Ichthyosis form Erythroderma

Ciara has such a positive outlook – and I love how she’s become confident enough to explain why she looks how she does to strangers. The love and pride Eleanor has for Ciara is gorgeous (she reminds me of my Mum!). This line made me tear up – so beautiful: “Oh Mummy, don’t apologise, I wanted to be born. I love my life”.

Eleanor speaks of Ciara’s talents – we share many of the same interests. Maybe creativity is in the genes too!

Ichthyosis Awareness Month – Anna and Barbara’s story: “Harlequin ichthyosis has changed all my life, my values and outlooks.”

I first saw this darling on Instagram – Anna had commented on Blessed By Brenna’s photos, and I clicked through to see photos of baby Barbara. Anna told me she’d been reading my blog, which I was excited to know, and I asked her if she’d like to share her story in May. I’m so glad she said yes. Barbara has Harlequin Ichthyosis.  Here Anna writes of how she and Barbara defied doctors’ prognosis, instead relishing in the wonderful life they have. You can follow Barbara’s story on Instagram
Meet Anna and Barbara. 
 

Ichthyosis Awareness Month – Rebekah’s story: “I’ve experienced people who think I’m stupid because of my skin.”

Rebekah is coming across the ditch from New Zealand for the Australian Ichthyosis Meet this Saturday. I am really excited that she’s making the trip, and that I can meet someone around my age with the condition. I’ve known her online for around three years – and see she leads a very active life. She has Lamellar Ichthyosis
Meet Rebekah. 

Introducing Carly Findlay & Ichthyosis Awareness Month

Hi everyone. I suppose some of you may remember that back in late January I had brunch with Carly Findlay and linked her blog in. I meant to do a post about her, but I kept forgetting (sorry Carly! :/). Well, now it’s Ichthyosis Awareness Month and I thought I’d better bloody well get on with writing that post I’d kept saying to myself that I’d write.

Carly Findlay is a blogger, writer, speaker and appearance activist, using her talents to challenge “people’s thinking about what it’s like to have a visibly different appearance”. She has a condition called ichthyosis and is currently (as she mentions below) planning a wedding with her lovely fiance, a blog course and the Ichthyosis Meet, while holding down a job. 🙂 She’s a really nice woman.

From her blog: “Ichthyosis (ick-thee-o-ses) is the name of a rare genetic skin disorder. Since it’s a genetic mutation, it isn’t contagious–you can’t “catch” it. Ichthyosis causes the skin to build up and scale, causing it to be extremely dry, among other problems. Most types of ichthyosis are present at birth, and are life-long. Currently, there is no cure, only treatments. 

“I am red and scaly. My skin gets itchy and sore. My face is the reddest part of my body because it is exposed to the elements. I get infections easily – generally on my legs, but sometimes on my face. Sometimes my infections result in hospital stays where I am bandaged up like a mummy. Infections can make me very sore.
My skin condition affects lots of other things in my body. My eyes, ears, digestive system, temperature and metabolism are all affected to a degree. I see lots of doctors!

“While it is medically challenging, the social challenges can be even more difficult. I am stared at, commented on and teased every day. I try to deal with peoples’ questions and rudeness the best way I can, with a smile and a polite answer (most of the time). Sometimes all I can do is laugh at the stupidity of some people!”
[found here: http://carlyfindlay.blogspot.com.au/p/what-is-ichthyosis.html]

So without further ado, this is an extract from her opening story for the month yesterday – go to her blog to read the full story and lots of other things! [found here: http://carlyfindlay.blogspot.com.au/2015/05/introducing-ichthyosis-awareness-month.html?utm_source=feedburner&utm_medium=email&utm_campaign=Feed:+TuneIntoRadioCarly+(Tune+into+Radio+Carly)%5D:

01 May 2015

Introducing Ichthyosis Awareness Month 2015. “Create the things you wish existed.”

Today is the start of Ichthyosis Awareness Month – where I will be sharing stories by patients and parents affected by the rare severe skin condition Ichthyosis. There will be one or two stories each day. You’ll get to know that the range of Ichthyosis types is extensive and the symptoms, appearance and treatment of each varies. You will read about peoples’ struggle to come to terms with a life changing condition, and also the courage to ignore society’s perceptions of difference and gain the self confidence to love and celebrate themselves. The contributors range in age – from 11 years old to their mid 60s. And you’ll also read about some of the cultural differences – there are contributors from Norway, Belarus and Indonesia this year. I am so excited to bring these stories to you. You will be able to read all of the posts here, as they’re published.

And so my theme for Ichthyosis Awareness Month 2015 is community. The blog project brings people together online, and the Australian Ichthyosis Meet will bring people together face to face – allowing us to laugh and maybe cry and experience the emotions of being with people who just get us.

For more information and to support research and networks for Ichthyosis, visit:
Foundation for Skin and Related Skin Types (FIRST)
Ichthyosis Support Group
Friends of Ichthyosis

For support and education around living with a facial difference, visit Changing Faces and Positive Exposure.

 
You can read stories from 2013 and 2014’s Ichthyosis Awareness Month too.

I’m not asking you to donate money. I do ask that you read and share these stories widely – to encourage people to think about how they react to visible difference and disability, and to continue to build a supportive community. That will make the world of difference.