20 May 2013

Ichthyosis Awareness Month: Nick's story ~ "the condition is a blessing in disguise."

Nick Jones is someone I can't wait to meet. He lives in London. I enjoy his cheekiness on Facebook, and I admire his positivity, perspective and humour about living with Ichthyosis. He is bold and honest - he reminds me of myself with his "this is how it is" attitude. Nick's poetry is extremely moving, and he's shared a poem for the Ichthyosis Awareness Month project.

"On September 27, 1989, an Alien was born. Somewhere. Probably. But on that very same day, I, Nick Jones, also emerged onto the scene.

Born prematurely, probable result of having Congenital Non-Bullous Ichtyosiform Erythroderma, and having hearing problems from day one, life wasn't looking towards the "normal" route,..says who? Not Me!

I've never let Ichthyosis stop me doing anything, I do what I want, when I want, and deal with any consequences later.


From a young age I've always been very sporty, Football is my main game, wind, rain, blistering heat, if folk are playing football, I'm there. Who cares if my skin disease means I can't sweat? I don't. I'l go, I'l play for hours, I'l overheat, so what? I had fun, n when I get home I'l lie stark bollock naked on the cold kitchen floor for a bit, problem solved.

There are many challenges in life, some people call them hurdles, I prefer to think of them as gauges, measurers, to see how determined you are to achieve what you want to achieve.

I left school at 16, had no clue what to do with my life, and a year later I had decided I wanted to become a Joiner, do you know what I did? I became a Joiner. I studied full time at a local college, battering my hands on the tools, the wood, the machinery, but it was more than worth it, I got what I wanted, the certificate to say I was a qualified Carpenter/Joiner.


I've heard a lot of folk with Ichthyosis say things like, "I know my limits". How? How can you draw a line under anything you want to do and say "No"? Limits? Fuck Limits!

There is a lot of ignorance in the world towards Ichthyosis, as there is with any disability, but its usually down to lack of education and awareness. Stick together, share the love, teach the world.

"The condition is a blessing in disguise,

You're strong. He's strong, She's strong, Together, They are untouchable."

Well I'm 23 now, I've fell off the wood work career path and I am seeking new adventures. I like my travelling, so might try to combine that with my next career choice, I've drifted around Europe a bit, France, Spain, Holland, and I'm off to Asia in May, Turkey to be exact, It will no doubt be far too hot, but who cares, they got Waterslides!

I'm going to love you and leave you, with a poem I wrote a while back, hope you enjoy,

Cheers for your time,

Nick Jones!


What do You see?

when You stand there staring at Me?

as if to say I can't be free,

as if to say I can't be Me!

Give Me an insult I haven't heard,

Then at least I Might take it on-board!

Flakey; heard it

Snowman; heard it

cornflakes, skin kid, heard 'em all,

Ya keep on pushin' but I don't fall!

What do You see?

when You stand there staring at Me?

It scared you, I liked that, You ran away screaming,

And that's why I chased You, (in-between creaming!)

I'm "different"? HA, You're all the same,

You should hang Your heads in shame.

What do You see?

when You stand there staring at Me?

You were a Bully I was a Kid,

You treated Me like an invalid.

I aint contagious but You thought I was,

so I'm guessing that makes ME boss!

...What do You see?"

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.



  1. This is an excellent post! Nick sounds like one strong individual and I'm sure Evan can learn something from his point of view and outlook on life. "It is what it is"
    And the poem is fantastic!!

  2. Sounds like a guy I would like to meet!

  3. Love the attitude-go for it !!!

  4. What a beautiful outlook - I think the same, a hurdle is just a test to see how much you want something.
    Love your attitude, mate! And good luck finding your next adventure!

    That poem is powerful!

  5. Thank You all for the responses. Not expected but thoroughly appreciated, find me on Fb is you wanna chat or ask me stuff, peace out.
    Thanks again x

    1. hi Nick - I'm trying to contact you to talk to you about a documentary series I'm working on - but I can't find you on FB ... might you please email me at sarah.allen@betty.co.uk

  6. Nick im really proud of you for sharing your story and writing this poem love you loads soph x

  7. Hello Nick, where did you disappear to. Not on my list yet again. Love your article, as usual, love your pics, always said you were a spunk!!! But one thing, 'know your limits' some people with Ichthyosis DO have limits whether they like it or not. Until they are met in the flesh (in person), nobody can say they don't have limitations. No amount of trying would allow me to climb a real mountain like someone else I know can do (with ichthyosis).

    When you get time Nick, let's chat again.


  8. Fantastic attitude and a powerful poet to boot!

  9. I love it. Nick you are an amazing writer. Wood working, travel, football and poetry. There must be a trade in there somewhere. Whatever you decide, Im sure you will be a continued success.


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