"Having CF makes me unique!": 5 things I wish you knew about CF

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As part of our #CFTruths campaign, 6-year-old Henry, who lives with CF, and his sister Emma, 9, share some of the things they wish more people knew about cystic fibrosis. What are your #CFTruths? Follow us on social media @cftrustuk and join the conversation!

Henry and EmmaHenry, 6, shares the five things he wishes people knew about living with cystic fibrosis. 

1. Living with CF can be tough - and boring!

CF can be hard to deal with sometimes, because I don’t always want to do my physio, but I have to. It can be boring!

2. Sometimes I get extra treats!

I get to have extra snacks at school to keep my weight up, which is good because it’s like getting extra treats.

3. I have to do lots of exercise to keep my lungs healthy

This is fun because I go kickboxing and I am the only one in my class who has a personal trainer at the gym and my friends are jealous. My personal trainer is called Lily. She's cool and plays football for Doncaster.

4. Having my blood taken isn't so fun!

I have to have lots of blood taken and sometimes it hurts, so my nurse lets me have special gas that makes me feel funny.

5. CF makes me unique

Having CF makes me special, because I am the only one in my school who has it and that means I’m unique.

Emma, 9, is big sister to Henry. Here are five things she wants people to know about having a sibling with CF. 

  1. Even though my brother sometimes gets more attention, I know that everyone loves me just as much

Henry has to do physio and take his meds, and sometimes mummy or daddy need to help him because he doesn’t want to do it. This can make me feel left out because Henry is getting more attention. So I don’t feel too left out, I have special days where it’s just me and mummy or me and daddy and we do something fun, like go wall climbing at Xscape or go for lunch.

2. I miss my brother lots when he goes into hospital

I am very close to my brother and very protective of him. I don’t like it when we’re not together. When he goes into hospital, I get sad because I don’t see him at school or when I come home.

3. Sometimes it’s tiring because I do the same amount of exercise as Henry (which is lots)

Henry and I like to do lots of things together. I used to go to gymnastics, but Henry went to martial arts. I decided that I wanted to do martial arts too, and now we are working towards our brown belts together.

4. I feel scared when Henry coughs a lot or I think there is something wrong

I feel scared when Henry has to go to hospital or when he is coughing lots because I love my brother lots and worry about something happening to him.

5. Even though my brother has CF, we still do all the fun things together that other brothers and sisters do

We play lots of games together, make up silly dances and sing songs. We love playing with our friends at the park, building dens, climbing trees and jumping on the trampoline.

Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. Over 10,800 people in the UK are living with cystic fibrosis (CF), but the condition is still widely misunderstood.

The COVID-19 pandemic has made common many of the everyday experiences of the CF community. The sacrifices made. The distances kept. The milestones missed.

But while many people now look forward to a return to normality as restrictions lift, the effects of the pandemic are not over for all of us. Those with cystic fibrosis must go on experiencing them, every day.

Because we were coughing before it went viral.

Find out more


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