Back in the Driving Seat - Cystic Fibrosis Appeal

What is CF?

A genetic disease that affects more than 10,000 people in the UK, CF causes a build-up of thick sticky mucus in the lungs, digestive system and other organs, which leads to a range of challenging symptoms.

People with CF have to come into hospital a lot for check ups. This can be very exhausting, as well as time-consuming and expensive. What's more, being on public transport exposes people with CF to infections that could make them really sick - even hospitalise them - and coming into a big polluted city like London can make their symptoms worse.

What does the platform offer?

Watch our video below to see how the platform will transform day-to-day life for people with CF.

How do we know it will help?

This platform will remove a lot of these worries for people with CF. But to ensure that it really works for them, the team here at Royal Brompton have been trialling the virtual consultations and remote-monitoring tools with a small group. Jo Acharya is part of this group.

Jo was diagnosed when she was two years old. Now 35, she works as a music therapist for adults with blindness and learning difficulties. To stay well, Jo carries out two sets of time-consuming physiotherapy to clear her airways and takes 40 tablets every day. Last year, she came into hospital 18 times – an exhausting four-hour round trip each time. Being able to monitor my health at home has helped me understand so much more about how my lungs operate, so I can worry less. I feel like I’m in the driving seat. One of the things about CF is you can’t prevent it from messing up your life at any given moment. Any control or independence you can get makes a real difference – it is empowering.

The trial has shown how invaluable this platform would be to thousands of people with CF. But in order to make it available to them, the project needs funds to develop

Help us give people with this complex disease greater freedom over their care and their lives to put them back in the driving seat.

Thank you for your support

If you'd like to throw a fundraising event in aid of our appeal, or take on one of our sponsored challenges, please click here, or contact [email protected]