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

May 1, 2015 Carly Findlay Leave a Comment

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.


Meet Alexander and Maria. 

Alexander: 
“My name is Alexander and I am 11 years old. I like playing and watching soccer.

Since I was very little, people have asked me if I’ve been sunburnt or make comments about the way I look. My parents and I get stopped quite often and people always feel free to give their advice or just stare at me when I’m walking past.

I try to ignore these comments and stares but it makes me sad, and I feel so different.

I often reply to people’s comments or questions with ‘no, I was born like this’. See, I was born with Ichthyosis, a disorder that makes my skin red and flaky.

I am excited about going to the conference in May because I get to meet other people like me. My mum has always talked about going to the US to a conference but now we get to have one here, in Australia. I will be able to ask them questions about how to look after my skin better and maybe even help others by sharing how I take care of myself. I would like to ask them how they answer people’s comments or deal with people’s stares and what its like when I grow up. I can’t wait till May!!”

Maria:

“Nearly 12 years ago, my husband and I were so excited to be expecting our first child.

I read all about the stages and development of the foetus and knew all the labour options available to us. We was prepared! Or so I thought.

From the moment my son was born, I knew something was wrong. As I held my child, I could see the pain in his eyes and I could see the panic in the nurses and obstetricians face. They told me that my son, Alexander was not going to daycare, or play outside with other children. All I could think of was that my child was going to be at home, no friends, no life!!!

We have always had an amazing medical network and supportive family and friends, but I still felt alone at the time. There was no one who REALLY understood. The most difficult thing to deal with was the lack of information we had available at the time. The literature was quite complex to understand and didn’t provide us with tips or other helpful information on how to look after our son.

Its hard to believe that 11 years later Alexander would have attended daycare since the age of one, swims in the local swimming pool and has fun at Wet n Wild during summer, participates in school sports, plays soccer and has a great group of friends at school and out of school. He touches everyone he meets with his funny and ‘glass half full’ attitude.

We are so fortunate to have an energetic and inspirational person like Carly in our lives. Her stories drive others to strive to achieve their goals, no matter the challenges you are dealt with. There is no limit!

She is the driving force for the first Australian Ichthyosis meeting that will be held in May 2015 and we are so excited. It means that we get to share stories with others, make new friends and my son will not feel so different. He will realize that he can achieve whatever he sets his mind to. We are really looking forward to it.”

May is Ichthyosis Awareness Month – I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.

Be social: follow me on Facebook, Twitter and Instagram.

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, Ichthyosis Awareness Month, ichthyosis awareness month 2015, Uncategorized

Comments

  1. Tera Grasser says

    May 1, 2015 at 11:02 pm

    Thanks for the positive article. I have nethertons too and you guys seem really awesome!

    Log in to Reply
  2. Nicole Rouge says

    May 3, 2015 at 6:51 am

    What a great little man Alexander is. This meet is such a great thing. I'm looking forward to helping out next week

    Log in to Reply
  3. Sandra Kelly says

    May 7, 2015 at 11:43 am

    Inspiring story. How wonderful to have the opportunity to meet others in Australia at this meet. I hope you all have a wonderful time getting to know each other. 🙂

    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

  • Some thoughts ahead of Disability Day
  • Peppermint Magazine feature - Disabled Icons
  • What's with the image descriptions on my social media posts?
  • A note on jealousy
  • My review of Wonder the film
  • I am not white. My racial identity.
  • The death of Offspring's Dr Patrick Reid. The TV death that stopped a nation.
  • Creamoata: a much loved, yet lost food of my childhood. Help me find it.
  • I'm featured in the Not Here To Make You Comfortable book!
  • The Greatest Showman - upliftspirational exploitation and the able gaze

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 © 2023 · 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.