I have cystic fibrosis related diabetes by Shannon, 16

Shannon, 16, has just attended her school prom and been bridesmaid at her mum’s wedding. She has been coming to Great Ormond Street Hospital (GOSH) since she was a baby. Here’s her story about her more recent stays at GOSH being treated for cystic fibrosis (CF) related diabetes.

Visiting GOSH

“When I was younger, I just came to GOSH for my CF check-ups and my annual review. After I was diagnosed with diabetes at the age of 11, I needed to stay in hospital for treatment.

“I have regular antibiotic treatment to keep me as well as I can be with CF. I usually stay in for two weeks at a time and have a course of oral and intravenous antibiotics. Depending on how I’m feeling, I usually come back every three months. Sometimes my CF gets the better of me, and I come in a bit earlier.

Treating diabetes

Teenage Real Story - GOSH patient Shannon
“I take insulin with everything I eat, but I’m on an insulin pump so I don’t have to do any injections.

“I have a little cannula in my stomach, and I have to change that every three days. It connects a small tube to a pump which I fill up with insulin. I type in my blood sugar level and then the number of carbs I’m eating then I press a button and it delivers the insulin to the cannula.

“It makes me feel a lot better. If you don’t get insulin to your body it makes your muscles ache among other things and it makes you drink a lot. When I’m connected to the pump I don’t have to worry about giving the insulin, so I feel healthy in myself.”

What’s staying in hospital like?

“I quite enjoy seeing all the nurses again when I come for my appointments at GOSH. Because I haven’t seen them for months, we have a good catch up.

“I see different doctors but I’ve got a main consultant that I see on the ward rounds.

“I like Hannah the diabetes nurse, because she always gives me loads of support. She praises me if I’m doing all my medication properly and keeping myself well.

“It does get boring though. All the staff are lovely and they always make sure that I’ve got something to do and I’m happy. So I guess it’s alright.

“I read a lot of magazines and I watch TV, I talk to people that are there and play on my laptop.

“When I go to the Hospital School I meet other children, but when I’m up on the ward I don’t. CF patients aren’t allowed to mix with each other because of infection control. We are more at risk from lung infections, so we have to stay in our own rooms. We talk across the corridor to each other though.

“I only go to the Hospital School if I want to. They come up and ask me if I’d like to, but they don’t make me. I bring a lot of my work with me and  I catch up quite easily when I go back to school.

“My teachers email me work too, which helps make sure I’ve got something to do.

Friends and Family

“I keep in touch with friends through Facebook and messaging.

“Parents can come in whenever. There’s a bed for one parent, one in each room, which means they can stay as long as they want. Because I’m that bit older my parents don’t tend to do that.

“I think I’d advise other patients to take things to do so they don’t get bored. I’d tell them it’s not scary and that they’ll get used to the atmosphere.

“It’s different because you’re not at home with your family. You feel a bit alone but then after a few days you do get to know people.

“It makes you independent because you have to ask questions and speak up for yourself.