My name is Paige and I am 20 years old. This is my story.

Ever since I was born the doctors were adamant that I had severe eczema despite my bright red blistering dry skin. One day my Mum was watching a documentary about the Bowen and Betts Sisters who suffered with Harlequin Ichthyosis, everything that was being described seemed all too familiar; so my Mum rang the Ichthyosis Support Group helpline that showed up at the end of the show and got through to Mandy, from that moment on my true ichthyosis story began. The Ichthyosis Support Group continues to support our whole family.

My Mum pushed and pushed through to the doctors in order to get more support from the healthcare professionals and a relevant diagnosis. Eventually my local Consultant Dermatologist diagnosed me with Ichthyosis Bullosa of Siemens, which at the time there was only seven other people in the UK to have that type.

Throughout my entire school life I was bullied for my skin, being labelled as ‘granny skin’ in Lower school with children refusing to hold hands with me in the playground. In Middle School I was once again picked on for occasionally having to use a suitcase to carry my books around, if my skin was too sore to carry a backpack, or I would face the constant questioning as to why I would always be applying creams. Even in Upper School where I was a lot more independent, I would always face people pointing out the ‘dandruff’ in my hair or be too afraid to get changed in front of everyone for PE. At times this would really get me down, especially when I was already having to plan my day around numerous baths and bandages. Despite my school journey, I left with GCSE’s and A-Levels, with grades that I couldn’t be prouder of.

I then found myself going to University, which was a huge hurdle to jump over. The struggle of trying to find accommodation, which had enough space for me to be able to apply creams and bandages in a sanitary way was a struggle. We never managed to find accommodation at an affordable cost with a bath, so my mum would often book a room in a Travelodge so that I could have a bath and effectively carry out my bath. More recently I travel home every weekend for my part time job, which then also allows me to have a bath at home and carry out my care. Having to cook without the assistance of family being able to help me open jars, if my skin was too tight. Throwing myself completely in to a brand-new way of life. However, from the support of the ISG, my family and the resilience I had built up throughout the years, I was having the most incredible time. As I’m sure some of you are already aware, sadly something, nothing to do with my skin happened, becoming a barrier to my University life. After a night out, my drink was spiked and I suffered from a severe sexual assault. The love and support I received during this time is something that will forever fill me with joy and happiness.

A key thing I have learnt is that my skin doesn’t define me, the sexual assault doesn’t define me. If you want to achieve something there is nothing stopping, you. Even if you have the most beautiful skin in the world, there will always be someone to pick out a flaw. Quite often, you are your own worst enemy, no one in the world can drag you down as much as you do to yourself.

I am only ever a message away if anybody ever has any questions about School/University life with ichthyosis, or even if you are just feeling down and want someone to talk to. I know how it feels. Just because everyday isn’t a leap, doesn’t mean it hasn’t been a small step.

If you’d like to make a donation to the Ichthyosis Support Group to support their wonderful work, supporting family’s like mine please click here

Paige