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. 
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