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: Joanna’s story ~ a full life lived.

May 24, 2013 Carly Findlay 1 Comment

Joanna and I have been friends online for about three years now. Her story shows that having Ichthyosis doesn’t stop us from having a full life. Joanna leads such an active life – works full time, goes to pubs, and travels a lot. I’d like to go for a drink with her sometime!

“My name is Joanna, I am 36 years old and I was born with a rare skin condition called Bullous Ichthyosis Erythroderma. This generally means I get blistering to my skin, mainly to my feet and legs but as I have got older I tend to suffer less with blistering. I was my parents first child and daughter, I have 2 younger brothers and the only member of my family to have the condition, I do have a 50/50 chance of passing it on should to any children I have. My parents wanted me to go to a mainstream school and treated me as they did my brothers. I missed a lot of school due to hospitalisation when my skin was bad and received a lot of bullying, mainly in high school but I have went onto leaving school to obtaining a GNVQ Level 2 in floristry and I started working for the government in the tax department from the age of 18. It is not the career I intended to follow as I always had dreams of being a nurse, teacher, air-steward, florist, artist but I do love my job and colleagues and managers at work have been very accepting of my condition especially when I have had to take a lot of sick leave and I cannot see myself at fastly approaching 40 doing something else career wise.

I have a very good close circle of friends and have over the last few years met several people with Ichthyosis and developed good friendships with these people and been lucky to meet some through a private group on Facebook. I know when I was a child there was nobody to really confide in and talk to other than family and close friends and I often felt alone but I realise this is not the case and it is great that here in the UK we have a support group called Ichthyosis Support Group and a their is a group which a good friend of mine set up called ‘Friends of Ichthyosis‘ and that is growing every day with new members and more awareness being raised.

I was taking Neotigason tablets from the age of 7 until I was 22 which helped control my skin but I decided to come off the tablets when I wanted to start a family, I got married at the age of 22, unfortunately, the marriage ended after 18 months, I have had long term relationships since but I am currently single. I often wonder if I will ever settle down or have children, but all I can do is take each day as it comes, be grateful for my life, good family and friends.

I love to socialise and travel, my parents have lived in Spain for 12 years now and I try and visit them as often as I can as the sun and a warmer climate does help my skin, but I cannot stand to get too hot because this can make my skin blister and become sore. Friends often say I should live abroad but I am settled here in the UK and am happy to remain here for the foreseeable future.”

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. Mary Treacy says

    May 27, 2014 at 1:41 pm

    Unless you had been told you would never know that Joanna has a chronic skin condition. She is a very courageous young lady and never complains about her problem. She is very attractive and has a great personality. I live in Spain and know her parents and so i see Joanna quite regularly and she is very friendly and lots of fun. There are so many conditions which people are unaware of and people struggle with them on a daily basis. It requires courage to share your story online but is important to raise awareness and hopefully funding so that more research can be done on ways to treat this condition and alleviate the suffering it brings.

    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

  • The Greatest Showman - upliftspirational exploitation and the able gaze
  • What's with the image descriptions on my social media posts?
  • Coke is my washing machine miracle - it de-greases clothes and the machine.
  • The death of Offspring's Dr Patrick Reid. The TV death that stopped a nation.
  • Interview with Beth Bradfield from Malory Towers
  • Disability is not a bad thing! - My keynote speech for International Day of People with Disability in Albury Wodonga
  • My concerns about Wonder the film (and how to talk to your kids about Wonder)
  • Callan Mulvey got married
  • Six at Best - Eddie Perfect - Offspring
  • Sixteen + books on disability by disabled writers.

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 © 2021 · 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.