Hospital life - Charlie's real story

Charlie is 7-years-old and has a rare inherited and auto inflammatory disease called CAPS (Cryopyrin-Associate Periodic Syndrome). Here, Charlie shares his story of coming to Great Ormond Street Hospital (GOSH). 

GOSH patient Charlie with his dog
Charlie with his pet dog

“I have CAPS and come to GOSH with my mum every eight weeks to get my treatment. When we come here we go to clinic where they ask my mum a few questions and then they ask me a few questions. I lie on the bed and they do some tests, like checking how my ankles and knees are. It doesn’t take very long. I have to get my bloods done to measure my inflammation levels and I have my Canakinumab injection. This is the treatment drug. I don’t like having my injections or having my blood taken.

“There’s a play area in the waiting area with a Wii and mega blocks. There are also lots of other children so you can make friends. The clinic I go to is only run once a month so I often see the same people each time I come here, and sometimes new people join as well.

“We visit the Lagoon for lunch sometimes and I like the food. The hospital looks good now that all the work’s been happening. I remember the old reception but the new one is better.

“The people here are very helpful and kind. My nurse Karen, on Penguin ward, is really nice. We can contact her when we’re at home as well if we have any problems.

“Having CAPS affects me in different ways. Sometimes I have good days and sometimes I have bad days. One day I might have a sore neck and another day it would be fine. When I have a bad day, I call it a flare. It affects my head, my tummy and my knees. I also get rashes on my skin. I usually get a flare every two weeks but my medicine makes me feel much better.

“I have inhalers and take a tablet for my chest problems. I also take Calpol and Nurofen when I’m not feeling great. I have an EpiPen in case I have an allergic reaction. I carry all these in my medikit.

“My advice to any young person coming to GOSH is if you’re coming here, just try and say hello to people and people will say hello back. Everyone’s really friendly so don’t worry about coming here and try to stay calm.”