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Day three: meet Amy

Amy is 27 and lives with her husband in Basingstoke. Here, she tells us how the vital support she receives from her employers helps her to complete her treatments, while the feat of maintaining her independence can take away from precious time with her friends.

Infographic that says: 63% of adults with CF were in some kind of employment, and this number was very different for male and female respondents. 27% of women with CF were in full-time employment and 52% of men were in full-time employmentWorking nine to five

“I started working after I finished my GCSEs. I struggled at school with my illness and didn’t feel like I could keep learning. I have an office-based job and my employers are very supportive of my health. They allow me to work from home when I need to, and I have flexible working hours to help me complete my treatments.”

Like Amy, everyone with CF should have the chance to pursue a fulfilling career if they can. We spoke to five people with CF about their experiences in the workplace, from Laura who encountered ignorance, to Michelle who established her own law firm with supportive colleagues. You can also find out more about looking for a job if you have CF and your rights in the workplace, or download our employment factsheet, on our work and cystic fibrosis page. Take a look at the results from our 2018 CF Insight Survey on the right to see how CF affects people in their careers.

Clearance made easier

“While I’ve managed to keep my lung function steady with oral antibiotics, IVs and nebulisers, I have an old injury to my ribs and muscles that has been made worse by excessive coughing. It hurts to take normal breaths and cough, but I’ve been prescribed strong pain killers because I have to try and cough to clear my lungs as much as possible. If I don’t, I’m in danger of fluid sitting on my lungs and catching something like Pneumonia.”

We’re funding researchers who are looking for drugs to water down the mucus in the lungs. Enterprise Therapeutics has been awarded a Venture and Innovation Award of over £97,000 and is contributing the same amount, for a research project looking for drugs that can boost the activity of an alternative chloride gate, to compensate for the faulty CFTR protein in people with cystic fibrosis.

Online exercise

“I work because I want to keep my independence as much as I can, but this means I have no time in the evenings to see anyone once I’ve eaten and done my medication. I already do lots of things to save time, like online shopping, using an online food preparation service and doing online prescriptions, which are sent straight to the pharmacy. It’s things like this that take time; cleaning nebulisers, setting up medicine pots, planning food. Taking tablets and doing my neb only take minutes.”

We’ve partnered up with Pactster, a specialist in community-based online workouts for specific health conditions, so that something time-consuming like exercise can become (almost) as easy as ordering your shopping online! With everything from singing to help with breathing control to kettlebell circuit workouts, there’s something for everyone on Pactster. You can also find useful articles and join group workout sessions using a handy group workout schedule. Sign up for a free account if you are a person with CF, a carer of someone with the condition, or a CF physio.

“Things have come a long way over the years, but as you get older you have to do more and more to keep yourself well, so it takes up more time. I want to keep working, I want to support myself, and being able to stay well is key to that.”

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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