Rare Together: A young girl’s story of her battle with scleroderma

Date: Fri 14th December 2018

Isla's story is part two of the second piece in our #RareTogether series of articles written by our community. She describes her personal journey with scleroderma and the difficult challenges her condition has presented. Keep an eye out for more articles here, or sign up for our E-News to get monthly updates about our new content.

In February 2016 I started to get pains in my knees and I didn't want to play games with friends in the playground. My hands were cold and would turn white, blue or purple and feel very strange. I didn't like it as sometimes they were very painful. At this time my friends would ask me lots of questions and I didn't know what was going on and I didn't want to answer them. I felt different.

Soon things that I liked to do became more difficult like PE, games and playtime. This made me sad. I found things often hurt or the cold weather would affect my hands and feet. Sometimes I found it difficult to walk or stand or I just felt really tired or unwell. Now I get lots of pains, I am poorly often and I have to take lots of medicine. This also means lots of hospital and doctor appointments. This doesn't make me very happy.

What I found most frustrating is that I love school and because of my condition I sometimes miss out on school activities and representing this school. My friends were selected to represent the school at netball, cross country, swimming and gymnastics. I didn't get selected or offered any of these opportunities. This did make me cry and feel very upset. I didn't get selected for the swimming because of my condition but I don't understand why as I was in the top group. My friends were all very excited and I would have been too. I know I can be unreliable but I just wanted the same opportunity.

The worst thing for me about having a condition is that it makes me really sad especially when I have a flare up and can't get about. Using a wheelchair is horrible. I never like going in one as people stare at me and then at my legs, it's weird. I have had to use one on a number of occasions. I hate taking medication and especially taking steroids as I have got much bigger and people have been so unkind. I have been told that my cheeks don't match my face, I'm really fat and that I would be no good at running because I'm so fat. I haven't wanted Mummy and Daddy to take photos of me. I am hoping that I will stop taking steroids soon. People can be really mean.

I do have lovely friends and teachers at school and just recently we watched a BBC Newsround programme about a girl with an invisible illness. I felt she was talking about me as it was exactly how I feel. This made me feel happy that there is somebody else like me. I have said to my Mummy and Daddy that I can't change things so I will try and be happy like she is. My nick name has been Isla the smiler since nursery, and I like this and I hope I will always be called this!

I am really happy and excited at the moment as I have just been selected to be on the Junior Leadership Team at school. We get to make lots of decisions about school. I have also been selected to be a lunchtime reception helper. I love looking after people and I was really excited to get these roles. The reception children are really cute. Hopefully they like me too and this has made me think that I want to have a job one day where I can care for other people.

I know things are changing all the time, like in July my consultant said that there is something wrong with my throat and that my muscles don't work very well. My Mummy said it's like a tube of toothpaste (the ones you push the toothpaste out of) and that when I eat, the food isn't pushed down properly. I had thought food was getting stuck, so I now have to have a drink with every meal and soon we are seeing somebody at the hospital for more information. My heart hurts after food as well and mummy said it's because of this problem too.

Living with a condition isn't easy but I want to be happy and with support I am sure I can be!

To find out more about Isla's story, read her mum's description of the challenges inherent in getting a correct diagnosis for her daughter here: Isla the smiler

If you want to help support people like Isla and her family, you can donate online today, or if you'd like to submit your own story for us to publish here or in our members magazine, send us your submissions here.