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Day two: meet Chloe

Chloe works and studies part time, and is a member of our Youth Advisory Group (YAG). Hear about the valuable lesson she learnt from her time at university, why she sees CF as a full-time job and her unique perspective on how CF can help you take time for yourself.

Infographic that reads: '77% of people with CF felt that their condition has had an impact on their career or education'School’s out, what’s next?

“I pushed myself so hard to get through uni, because if my health stopped me from progressing in life I wanted to finish sooner rather than later. Ironically, it was pushing myself too much with studies that made me so unwell, and that’s why I had to take a few years out. Now I make health a priority, and I feel stronger, physically and emotionally.”

There are hundreds of avenues for you to choose from when you leave school, whether you have CF or not. Maybe you want to go to university, maybe you’ve got your heart set on a college course, maybe you want to go travelling with friends, or maybe you have no idea what you want to do next. Whatever you choose, we’re here to help you balance your CF with your work or studies and get the most out of your experiences. Explore our brand-new leaving school resources, which include a video and booklets for young people and parents, and even a handy guide about CF for you to share with your training provider, college or university.

Take a look at the results from our 2018 CF Insight Survey on the right to see how people with CF feel their conditions have affected their education.

Researching for sweet success

“I have CF-related diabetes, and I find this to be more time consuming and not as easy as just popping pills. When I was younger I used to go to the bathroom at lunchtime so people wouldn’t see me injecting insulin.”

As anyone with CF will know, the condition can come with a lot of extra complications, and many people like Chloe tell us that managing CF-related diabetes (CFRD), which affects up to half of people with CF, can be even more time-consuming than their other treatments. We’re funding a study to understand more about how the diet of people with CF affects their blood-sugar levels, and whether changing their diet could help them to manage their CFRD. This study is funded by £25,000 from the Cystic Fibrosis Trust and an incredible £269,498 from the National Institute for Health Research, and, if the results are promising in later studies, could help inform guidelines on diet and CFRD in the future. We're also funding another £750,000 into treating CFRD - find out more.

Get social

“I also have liver disease, which is a complication of my CF, and I no longer drink alcohol, to slow the progression of the disease. Sometimes I miss having a drink when I’m out socialising with friends, but I certainly don’t miss the hangover the day after!”

Want a different way to socialise? What if we said you could hang out virtually with other people with CF and gain new skills while you’re at it? Building Brighter Futures, our programme from 10–18-year-olds funded by BBC Children in Need is launching a brand new workshop this Thursday (21 June). ‘Art for well-being’ will run for six weeks and will be led by a qualified mental health professional with 20 years’ experience in art therapy. The workshops will allow participants to explore art and creativity to manage their physical and mental health.

Taking back time

“I think people who don’t have CF don’t realise that it’s like having another full-time job. The thing that made me consider CF a disability was realising how ‘disabling’, or time consuming, it all is.”

We’re helping people with CF to take time back through research like SmartCareCF, which is looking at the feasibility of monitoring their symptoms remotely. This flagship project is identifying and testing different technologies to find effective solutions for people with CF to measure their health at home, which could allow people with CF to monitor their symptoms more regularly, potentially reducing clinic appointments, and giving them more control over their health.

“I don’t always see the time (CF) takes as a problem – if I did, life would be really difficult! In a way it can be a good excuse when I need a break from studying to do my physio and listen to music, or do my nebulisers and watch a TV show.”

What's next?

Life after transplant, having CF in the workplace, juggling treatments and socialising. Whatever it is that interests you, we've got loads for you to explore this CF Week! Head to our home page, where you can choose between Michelle, Chloe, Amy and Dom and get their unique perspective on time and CF, and find out what we're doing to give time back.

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Explore CF Week 2018

Explore CF Week at your leisure and learn more about Michelle, Chloe, Amy and Dom, people with cystic fibrosis who are sharing their unique stories with us this week. You can also find out what we're doing to give time back to people with CF and their families.

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Wear Yellow Day 2018

Don't forget to join us for Wear Yellow Day on Friday 22 June. Pull on your sunniest clothes and accessories, snap a photo and share it on social media using the hashtag #CFYelfie!

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