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 – Nicolle’s story: “I’m looking nowhere near the age of 78 as the doctor predicted!”

May 15, 2015 Carly Findlay Leave a Comment

I came across Nicolle online when I was featured on the Make it Look Easy Facebook page.  She commented on my photo, saying she also has Ichthyosis. Nicolle has Ichthyosis Vulgaris and lives in South Australia. 

Meet Nicolle. 

“HI I am Nicolle and I was born with Icthyosis Vulgaris or common Icthyosis.

From what I understand my skin has a mutated gene which causes me to retain dead skin cells rather than shedding them normally which causes a build up mainly on my torso, upper thighs, calves and back which results in a dark fish scale appearance and hours spent exfoliating and sloughing of the dead skin. After a shower I have to apply moisturiser straight away as I can feel my skin tightening so quickly after the water evaporates it almost hurts.

Mum said she noticed when I was around 6 weeks of age that I had dry patches of skin. Doctors advised her not to use soaps or perfumes etc and that was about all the guidance she received.

From then on Mum and I managed my skin with sorbolene cream ,I knew to never use bubble bath etc as it would dry my skin out completely, so all I ever really wanted was a bubble bath!!

Although my Icthyosis is mild I remeber returning to the doctors in my teens as my skin was not responding to sorbolene cream as well as it once had and it kind of went down hill from there. My Doctor actually asked how I was managing my Icthyosis, as a young family member of his, had been diagnosed and even as a doctor, he was having trouble finding remedies. The same doctor told me ( a teen girl ) I would look like I were 80 yrs old by the time I reached 40 because of the effect the icthyosis would cause on my skin…. great, so much to look forward to.

My skin was getting so bad in winter,the backs of my calves would split and bleed, my clothes would hurt my skin as they rubbed against me and even though it would be the middle of winter my face around my chin and nose would peel.

I covered up as much as I could and it would take til the middle of summer for any improvements to occur and there were summers as a teenager and young adult I only wore long skirts and pants to hide the scars from winter.

Trying on clothes at the shops was diabolical as I’d leave behind dry flaky skin and I would always feel so bad and try in vain to shake and brush it off.

I was never ridiculed or teased, that I can remember, Im not sure anyone even noticed although I was paranoid. People would sometimes ask why my nose was peeling in the middle of winter and I would say I must have caught some sun at some stage. Or they would ask why I would be wearing long pants on a hot day to which I would reply “I’m not hot”.

Dating had its obvious problems (black underwear was definitely tabou) and my hands have a roughness which unless I was dating tradies most had softer hands than my own.I did however meet the love of my life 20 yrs ago and we have two beautiful children, he never really understood why I worried so much about my skin but he did worry for me when my skin was painful.

I lived like this for many years and am now 38. I improved my skin regime about 10yrs ago and went on a mission to find a better suited moisturiser by reading online forums and doing my own resesrch. I use Dermadrate with Urea and lactic acid and it really has been amazing. Icthyosis Vulgaris can improve with age which seems to be apparent in my case although I still run for the moisturiser straight after my shower but I now wear shorts, short skirts and my legs no longer split and bleed and for 38 I think I’m doing alright and looking nowhere near the age of 78 as the doctor predicted.

Thankyou Carly for sharing my story and along with all you do, I can only wish my story gives someone else some hope.”


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 month 2015, Uncategorized

Comments

  1. Anonymous says

    May 16, 2015 at 3:36 am

    Nicolle, your story is encouraging to me!!! My daughter (8mths) has Vulagaris and it's helpful hearing that you have figured out what works best for you and are leading a full hPpy life! The unknown is what scares me some days.

    Log in to Reply
  2. Gene Yates says

    May 17, 2015 at 11:39 pm

    Nicolle me and two of my kids have vulgaris too thanks for sharing your story our symptoms keep up the good work your so encuraging.and happy ×××

    Log in to Reply
  3. Unknown says

    May 31, 2016 at 5:55 am

    i have ichthyosis i hate it , anyway when i was groing up some 40 years ago no one told me what i had , i guess they didnt know in this time frame , but i do remember the school days we would have gym and i would hate to put on the p.e. shorts but of course i had too and all the kids would make fun of me 🙁 i was so mad at life and why i had this it hurt so much , no one understands what that does as a kid growing up , i still at 47 years old can't stand it

    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

  • Ichthyosis Awareness Month - The Girl Behind the Face: "Life’s rarely been split between either laughter or tears; both have existed simultaneously."
  • What's with the image descriptions on my social media posts?
  • Creamoata: a much loved, yet lost food of my childhood. Help me find it.
  • 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.
  • Ichthyosis Awareness Month: Nutritional advice from a dietician.
  • Interview with Beth Bradfield from Malory Towers
  • Ichthyosis advocacy fatigue
  • Stop apologising for your appearance
  • Face Equality is a Human Right

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.