Carly Findlay

Writer, speaker, appearance activist. Loving life!

  • About me
  • Say Hello – my book
  • Hire me!
  • Support Me
  • Contact
  • What is Ichthyosis?
  • Ichthyosis + appearance diversity resources
  • Disclaimer
  • Shop
  • Guest post contribution guidelines
  • Growing Up Disabled in Australia

Ichthyosis Awareness Month: Lucia’s story ~ looking at the Wonders of Netherton’s Syndrome.

May 10, 2013 Carly Findlay 10 Comments

My friend Jeff told me about Lucia, a fellow Aussie, when she was a tiny girl. Her Mum, Francesca, and I have connected on Facebook recently. I love Francesca’s piece – she has certainly found the positives in Ichthyosis, and that’s very uplifting! I too see positives in my condition, and relate to all of the “wonders” Francesca has listed. Lucia has written some words too.

“Our 7yr old daughter has Netherton’s Syndrome or ichthyosis linearis circumflexa; when this condition is qualified, as it has to be on a daily basis because people are always curious, the habitual response we receive is: ‘ oh, really, I’ve never heard of it’. No surprises there, given the rarity of the occurrence.

I couldn’t even say ‘ichthyosis’ correctly for the first month, let alone comprehend how our alleged autosomal recessive genes had made our newborn so incredibly sick, red raw and battling for her life. And just for the record, no, my partner and I are not related. (Bit of a common question circa late 2005 in the PICU of a large Queensland hospital!)

Unless a particular condition affects you or someone close to you, the likelihood of you ever knowing any details about it are very slim. We entered a whole new world of unusual, complex and special terms; of statistics and genetic queries; of disability and special needs – oxygen, CPAP, blood transfusions, biopsies, feed machines, tubes, multi intravenous lines – and had to learn all about this remarkable, rare syndrome.

I see our daughter struggle through every day in certain areas, particularly the rigorous skin-care regimen. It sucks. She’s an absolute trooper though and despite protesting quite vocally everyday, especially on the scalp protocol, she has come to understand that it is necessary to make her as comfortable as possible. Sure she has no other experience, but she is very conscious that her skin is different and that her care is far more involved than her peers. And there are some days she wishes she were not so ‘special’. I have this feeling too when I see how others react to her. (Why do people always look so aggressive when they feel the need to stare?)

We have tried and tested many different methods to handle these days, some far more effective than others. But now when we have to qualify what NS is, I try and put our experience and research to good use and look at the ‘Wonders of Nethertons’, because quite frankly it is quite a remarkable condition.

So for our family these are the ‘Wonders of NS’:

1. Where does all this skin come from? The skin production is incredible, really, really impressive and like clockwork, every day, without fail. The reliability of its growth is relentless. Wow!

In the beginning I wanted to keep all the shed skin – I felt I ought to, as it seemed to be so much of my tiny, fragile child, her layers, and her very existence. The shedding of skin in those first months of life seemed prolific and I wanted to put it to good use. But it soon became clear that this extraordinary skin production was ongoing and I had to accept that keeping it all really wasn’t helping anyone. Maybe one day they’ll find a use…

2. Childhood obesity will never, ever be an issue for our little girl. Yay! After a particularly tough start on the oral eating front (tube-fed for several years) and battling the omnipresent ‘failure to thrive’ symptoms amongst others, she now loves real food. It is still an absolute treat to watch her eat and she has a certain fondness for the most expensive deli items that one can find! Bless her! She eats regularly, and lots of it. Her signature dish is homemade ravioli and it is not uncommon for 2 adult size pasta bowls to be devoured with gusto. Wow! Yet at 7 years and 6 months old she weighs 17 kg and hence is below the 5th percentile. But that’s ok, because she is such a busy little hub of skin creation and her metabolism is phenomenal. We once saw a dermatologist who continually expressed surprise at our daughter’s ‘alert’ state or lack of fatigue – when questioned why this concerned her, she compared our child’s metabolic rate to be the equivalent of me, walking up a steep hill, 24/7, with a 20kg pack on my back. Wow, I say, again.

3. Our daughter does most of this growing while she is asleep hence her slumber is deep, very deep. Really deep, but she still gets up if nature calls. Wow. And as she needs her shut-eye we get sleep-ins, yay! No unnecessary early morning rises for this family and she even sometimes volunteers for bed in the evening! It is as though she is fully aware of all the work ahead of her and makes the necessary preparations.

4. Her resilience to ignorance is sensational! While I tend to transform into Mumma Bear Extraordinaire – skills I have honed over the years dealing with comments such as: “you don’t deserve to be a mother”, “ever heard of sunblock duh?”, “you are obviously in denial about this eczema” and “OMG what happened to it” – our daughter rises well above this rudeness and ignorance. In my absence I know she finds her own way of dealing with these ‘OMG your face is so red!’ – the current retort is ‘yes, and you are so rude!’ Wow, if only I could be as succinct.

5. Networking – as a good and dear friend with ichthyosis highlighted for me early on, our daughter would have the most exceptional networking skills. And she does. Whether she knows it or not, no-one ever forgets her – whether we are at the local pool, butcher, public toilet, dog -park, post office, theatre, airport there will always be someone who greets her in a familiar way. Wow. However, it is potentially embarrassing for me, as I may need to check back to recent MBE (Mumma Bear Extraordinaire) behaviour and hope that aforementioned lovely, friendly person wasn’t on the receiving end.

 

I asked our daughter to also contribute to this post:

“There are a lot of other people around the world that don’t have skin like us. It is kind of painful, I like it but not when it hurts. And I do not like it when everybody stares at me but the people in the deli know me. I am unique to everyone at school.”

 

This post is part of the Ichthyosis Awareness Month project. For all posts in this project, click here.

For Ichthyosis and appearance diversity resources, click here.

 

Share this:

  • Click to print (Opens in new window)
  • Click to email this to a friend (Opens in new window)
  • Click to share on Twitter (Opens in new window)
  • Click to share on Facebook (Opens in new window)

Related

ichthyosis, Ichthyosis Awareness Month, skin, Uncategorized

Comments

  1. Easy Peasy Kids says

    May 11, 2013 at 9:43 am

    Hello Lucia thank you for sharing what it's like for you and yes you are beautifully unique. I work with lots of children and I'm going to talk to them about you are, so they learn about how different everyone is. I'd also love to send you a present for sharing how you feel you can ask mummy if that's ok and I'll send it to Carly and she can send it to you. Lots of love
    Nathalie x

    Log in to Reply
  2. CWestlake says

    May 11, 2013 at 12:12 pm

    Lucia is so cute!! I absolutely love this post – it is honest but uplifting, and those are the best kinds of reads. Hope to connect with this family soon!

    Log in to Reply
  3. Anonymous says

    May 11, 2013 at 2:14 pm

    If I saw Lucia I might have guessed scleroderma.

    You're a cute kid, Lucia. Seven begins some of the best years of childhood–you're big enough to have a little independence but small enough that there are usually adults nearby to help if anything goes wrong.

    So go out, have adventures, and run those adults ragged trying to keep up with you!

    Log in to Reply
  4. willywagtail says

    May 11, 2013 at 8:03 pm

    What a beautiful attitude you have and it certainly pays off in your daughter's lovely smile. I too had a 'failure to thrive' baby and I must say it saves heaps of money in clothes! Their cuteness also adds to people's friendliness even though my daughter had a different shape to her chin than others. Her tiny bones made no difference to her brains and even at 5 foot and size 5 shoe now she has gone on to complete an accounting course and works hard to overcome her natural shyness. Cherrie

    Log in to Reply
  5. Francesca says

    May 11, 2013 at 8:03 pm

    We'd love to connect with you too:)

    Log in to Reply
  6. Francesca says

    May 11, 2013 at 8:03 pm

    Thanks Nathalie, for all your lovely comments – Lucia would love to receive your present, and if we can send anything down to you to share with the children you work with, we'd be happy to help, Francesca

    Log in to Reply
  7. Melody says

    May 11, 2013 at 8:53 pm

    Wow. What a great little story and what an awesome little girl with such strength.

    Log in to Reply
  8. missfairchildscharmschool says

    May 12, 2013 at 3:30 pm

    Thank you for sharing. Mama bear protectiveness is just natural. But you are raising a wonderful little girl there.

    Log in to Reply
  9. Anonymous says

    May 14, 2013 at 4:59 pm

    WOW I just loved the way you turned all the differences into benefits for you and the family. I had a big smile on my face. And Lucia you are just gorgeous sweetie. And despite the stares, some people will remember you and greet you with affection. you deserve it sweetie. You are just beautiful, who wouldn't be able to resist. 🙂 Love Pauline

    Log in to Reply
  10. Lucius Phang says

    January 10, 2015 at 5:11 am

    Thank you for sharing your story. We have a daughter with NS too and we are living in Adelaide. It's comforting to know that they can grow up active, beautiful and wonderful.

    Log in to Reply

Leave a Reply Cancel reply

You must be logged in to post a comment.

This site uses Akismet to reduce spam. Learn how your comment data is processed.

Socials

  • View tune.into.radio.carly’s profile on Facebook
  • View @carlyfindlay’s profile on Twitter
  • View carlyfindlay’s profile on Instagram
  • View sqoggle’s profile on YouTube

Book me to speak

Sign up for some love in your inbox

Listen to my podcast

Tune in

Enter your email address to receive new posts by email.

Archives

Popular Posts

  • What's with the image descriptions on my social media posts?
  • Dear disabled friend on International Day of People with Disability 2021
  • Interview with Beth Bradfield from Malory Towers
  • Six at Best - Eddie Perfect - Offspring
  • July is Disability Pride Month
  • The death of Offspring's Dr Patrick Reid. The TV death that stopped a nation.
  • Coke is my washing machine miracle - it de-greases clothes and the machine.
  • Stop praying for and exploiting disabled children and adults on Facebook.
  • Ichthyosis and exercise
  • What kind of person laughs at a stranger's face?

Copyright

The material on Tune into Radio Carly is copyright. The writing in this blog is by Carly Findlay unless otherwise stated. Most photos in this blog are by Carly Findlay unless otherwise stated. Please do not reproduce without permission from Carly Findlay. This blog represents my personal opinions and experiences. It does not reflect those of my employers'. The information I provide about ichthyosis is mostly based on personal experiences. Please seek medical advice or counseling before trying any new treatments I've written about. Where stared, I use affiliate links on this blog. By clicking them, I receive a small percentage of the purchase.

Copyright © 2022 · Daily Dish Pro Theme on Genesis Framework · WordPress · Log in

loading Cancel
Post was not sent - check your email addresses!
Email check failed, please try again
Sorry, your blog cannot share posts by email.