Connective Tissue Disease and the impact it has on my daily life - by Chloe Berry
Posted on 15th September 2021 at 10:55
Did you know that every day more than 619 children walk through the doors of Great Ormond Street Hospital for life changing treatments https://www.gosh.org/what-we-do/.
And I am one of those children. Hi, my name is Chloe Berry. I’m 12 years old and I have a connective tissue disease. For those of you that don’t know, a connective tissue disease is any disease that affects the parts of the human body that connects the structure of the body together. There are more than 200 different types of connective tissue diseases https://my.clevelandclinic.org/health/diseases/14803-connective-tissue-diseases. Mine is currently a undifferentiated connective tissue disease and this is due to my symptoms branching over a few different diseases.
More recently, my consultant has said that it is evolving into systematic lupus erythematosus which is a chronic and presently incurable illness of the immune system.
I have not only have fantastic consultants at Great Ormond Street Hospital, I also have consultants at Guys Hospital in London, as well as a local consultant. They all work together to make sure I am on the right medication to control my disease and carry out all of the necessary test I need to keep my body healthy and functioning.
What it’s like to have my condition
I don’t mind having a connective tissue disease, however, it does get in the way of my life at times. For instance, I have to go bed early otherwise I start to feel poorly. By feeling poorly I mean that my joints ache, I get headaches and begin to feel sick. I get embarrassed about this, especially in front of my friends.
When I’m in the sun I have to wear a sun hat and sun cream all of the time! Even when the sun shining through my window or the light from my phone or laptop screen causes my skin to burn causing photosensitivity rashes which make me have bad headaches and feel really unwell. It can also lead to extreme joint pain.
Due to my photosensitivity, I sometimes can’t go outside with my friends and this causes me to get frustrated and angry.
I hate having to take all of my tablets all of the time, they taste disgusting and it’s horrible having to revolve my life around medication.
However, it’s not doom and gloom though as I love learning about my condition, the different parts of the body and how it works. This is something I wouldn’t have learnt if I didn’t have this disease. I like watching having my bloods taken, and watching the screen as they scan my heart and kidneys. It is pretty fascinating.
The play therapists at the hospital are really cool and they cheer me up when I’m feeling anxious, especially if I am having a new test done. I thought my lung function test were really funny. I had to enter what looked like a gas chamber and then put a peg on my nose whilst blowing into a tube to make a hot air balloon fly. Not something you do every day, my mum laughed at me and told me I looked hilarious, which I did, so I then got the giggles and couldn’t stop laughing. I did get to take the nose peg home to keep!
Impact on School Life
I can be pretty normal at school and no one would really know I had an illness. I used to get annoyed that I never got a 100% attendance certificate like my sisters would and still do. Of course, this was due to various hospital appointments and sick days. If I truly being honest, it does still annoy me now, but I have come to realise it can’t be helped.
At lunch times, I have to go to my head of year office to reapply sun cream, otherwise I forget. It does take up a chunk of my free time and can spoil this when I just want to hang out with my friends.
I’m not much different to any other person, I just struggle with tiredness, achey joints and rashes. I love to play football and can keep up with my team mates. My coach says that I’m an excellent player and an asset to the team. The effect of football hit me after a match or training session, I struggle when I get home and need to rest for the remainder of the day which consists of laying on my bed or watching television.
One thing I do a lot is fundraising for Great Ormond Street Hospital. They have done so much for me so I like to give something back. Every year my family and I run the 5k race for kids at Hyde Park. I have also made and sold origami to raise funds in the past. This month my mum and I are doing the 2000 squats in September for Great Ormond Street Hospital. If you would like to sponsor me please do so on my mum’s Facebook page www.facebook.com/505380455/posts/10165685621110456/?d=n
I would say to anyone that has an illness or is a little different, you’re not alone and even though it can be extremely limiting and frustrating at times. It can be pretty cool to be different sometimes and have a story to tell.
I took inspiration of sharing my story from a friend sharing her story too, if anyone else has a story to tell they should share it to help people understand and learn..
Tagged as: complex needs, connective tissue disease, GOSH, impact on young people, living with a condition
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