16 May 2015

Ichthyosis Awareness Month - Nicolle's story: "I'm looking nowhere near the age of 78 as the doctor predicted!"

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.

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  1. 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.

  2. 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 ×××

  3. 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


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