Juvenile systemic lupus erythemastosus
Updated: Jun 5, 2020
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 my diagnosis with an illness called Juvenile Systemic Lupus Erythemastosus (Lupus). It is a condition that makes your immune system misbehave and can affect any part of your body and 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 me 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 my aims is to raise awareness and share my experiences so I can help other people.
Living with Lupus as a child and young person
Last year I created a website called Kattysterritory.com, its about me, Lupus, my experiences and living life on my terms. When you have any long-term illness you need 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 easier said than done! Often as a young child growing up I found my voice wasn’t heard. Everyone focused on making me better, I know this was for my benefit but at times it didn’t feel like that. I began to feel more in control, as I became a teenager because questions were directed at me. I also felt more confident to say ‘no’ about things I wasn’t happy about with encouragement from the people closest to me. To share my experiences further, I became involved in Great Ormond Street Hospitals young peoples forum (YPF), to help influence and shape the services they provide. I have also been actively involved in various patient participation and involvement projects, to represent a young patient perspective in developing and delivering NHS services. I’m also writing articles for Lupus UK the national organisation for patients and families affected by Lupus. This is tiring work as I also have chronic fatigue, but knowing I can make a difference makes me 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.
"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."
For more information Visit my website to find out more Kattysterritory.com Katty was featured in issue 008 of Rare Revolution, read the article here