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.