Juvenile Systemic Lupus Erythemastosus

Katrina Brooks aka Katty created her website Kattysterritory.com
​about herself and living with Lupus

I was diagnosed with Lupus at nine years old, it was a roller coaster, coping with all the hospital appointments, taking lots of medication and the emotional ups and downs of not knowing the future.

What is Lupus?

It's been ten years since Katty's diagnosis of the condition that makes the immune system misbehave and can affect any part of the body, it can be life threatening. Lupus is considered as a more common rare disease, but it is quite rare for children to be diagnosed with it.

Like many less known conditions Lupus can be hard to treat, and because many of the symptoms cannot be physically seen, often young people like Katty with Lupus (and other invisible illnesses), feel like they are ignored and disbelieved due to the lack of physical signs of being unwell. It can be really hard coping with any long-term illness, but one of her aims is to raise awareness and  share her experiences so that she can help other people.

Living with Lupus as a child and young person
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Creating her website has given her an outlet to describe her experiences and living on her terms with Lupus, it has also given her a platform in advocating and raising awareness for young people living with long-term health conditions.

Katty talks about when you have any long-term illness needing your family, doctors, school, and other agencies to work with you to make sure you remain well. But even more importantly is making sure that you have a voice, and any decisions involve
you. Sometimes this is easier said than done, particularly when you are a child!

Often as a child growing up she found her voice wasn’t heard. Everyone focused on making her better, whilst Katty understood that it was for her benefit, at times it didn't feel like that. As she became a teenager she began to feel more in control because questions were directed to her. Katty felt more confident to say 'no' to things she wasn't happy about with encouragement from the people closest to her.

To share her experiences, Katty is also involved in Great Ormond Street Hospital's young peoples forum (YPF), which helps to influence and shape the services they provide. Katty is actively involved in various Patient Participation and involvement projects, in an aim to represent a young patient perspective in developing and delivering NHS services. Katty writes articles for Lupus UK, the national organisation for patients and families affected by Lupus.  She admits that this work can be tiring as she has chronic fatigue, but knowing she can make a difference makes her continue. 

When you have a serious long-term condition you can be left feeling powerless when the world around you continues and you have to stop. I've just learned to find different ways to express myself and to cope

Katty

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For more information
Visit Kattyterritory.com to find out more
​Katty was featured in issue 008 of Rare Revolution, read the article here

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