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.