Emma and Stacey

Written in 2006Picken 2

Hi, I’m Emma and I am 13.  I’ve got lamellar ichthyosis and so has my sister Stacey.  I’ve got two other sisters and a brother, they have nothing wrong with them!  Me and Stacey are the only ones in our family that got lamellar ichthyosis!  When I was born I had this light green skin that was only on half of my face.  My mum said it looked like I had a green mask going across my face!!!

The first cream I tried was aqueous cream and when Stacey was born two years after me, we both had the same cream.  For a couple of years we had aqueous cream 2 to 3 times a day and a bath 2 times a day!  When I turned 3, I had Neotigason tablets.  Same with Stacey when she turned 3.

When I started school nobody talked to me, they were scared of me!  I was too shy to go up to them.  Things changed when I was in year 3, I met a girl called Jade.  This changed my life, I’d finally got a friend and it all started when I said I liked her china doll.  Jade had other friends and since that day the whole school knew me.

Fun on an ISG trip

But the one thing that will never change is people whispering things about my skin, and the worst thing that happens every day of my life is people’s eyes staring at me!  I cannot stop it.  No big and fantastic invention. It can never get people from staring at you. Up to my age, 13, nothing is going to stop people staring at you.

When I was in year 4 we moved and I went to another school.  I hated it there, I got bullied and people tripped me up every 5 seconds.  But Stacey loved it, she had Jordan in her class.  Jordan is our cousin. It was alright for her, I wanted to move school.  So we did, but unfortunately Stacey had to leave too and we both went to another school.  I was nearly at the end of year 5 when we went to that school and I made 2 friends, Leanne and Fiona, but they weren’t really my friends!  My friends, the true friends that I’ve got are back in Swindon. I still keep in touch with them.

Then I did my S.A.T.S in year 6 and went to Secondary school.  When I first started a boy bullied me a lot, but it got sorted out!  A couple of people bullied me that year but the special thing is I made friends called Georgia, Coraleigh, Hannah and Ruby.  They looked at me, they treat me like I’m a normal person.  In year 8 I got bullied, but there is always someone stupid out there and they don’t understand my life!Picken 3

But for you people out there with ichthyosis, keep strong, stay strong.  They are stupid, they are weak – I learned that years ago!

Written in 2013

Our ichthyosis is a part of us, and always will be. Although sometimes we hate it, and it gives us grief from other people, we’ve accepted it and are not letting ichthyosis get in the way of our dreams.

The Ichthyosis Support Group has been a great help for us, they helped my parents when we were younger and also helped us. Through the fun days they organise every year, it helps us feel like we’re normal for the day, and also feel like we’re not alone. We’ve been a couple of times, and from that we made friends and learnt how other people the same age as us cope. So we’re thankful for the ISG as they’ve helped us a lot.

To vote for the Ichthyosis Support Group in the National Lottery Awards online click here or telephone 0844 836 9701

 

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