Thursday 19 September 2013

In their own words: The stars of '...the rest is up to me'

Yesterday we released ‘…the rest is up to me’, a film we made about teenagers with cystic fibrosis. They spoke in their own words about cystic fibrosis and how it affects their lives.

We asked some of the teenagers why they took part in our film and what they hope it will achieve:

Holly Van Geffen

When I tell people I have cystic fibrosis their immediate reaction is “You don’t look ill”. They’re right, from the outside I don’t, I look normal, but the inside of my body tells a very different story. My ‘normal’ appearance is one of the reasons raising awareness of cystic fibrosis is so hard and why when I saw the opportunity to be in this film I jumped at it!

Most of my treatments go on behind closed doors, it is rare that people get a full insight into the everyday routine we have to carry out to ensure we look as ‘normal’ as we do. I hope this film opens people’s eyes to how difficult living with cystic fibrosis is and how much determination and strength it takes to carry on the fight. My life motto is ‘always have hope’, and I am always hoping for improvements in treatments and one day, a cure.

Ben Witham
I hope this film makes people aware not only of what cystic fibrosis is like for teenagers but also for what it is like for everyone else with cystic fibrosis, regardless of age. It's a great way to make people aware. I wanted to take part in the filming for many reasons and doing so for a charity that I was a part of was even better. I feel cystic fibrosis isn't a widely recognised condition, even though it's fairly common and the Cystic Fibrosis Trust isn’t that well known. That was why I wanted to take part in this, more people need to be made aware of cystic fibrosis and the work the Trust does. They do a really good job.

The Trust has helped raise awareness as well as provide support for people like me and when it’s just a small amount, I'm happy with that, that's the best part of it (as well as being filmed, that was fun too).

Cicely Matthews

I really enjoyed doing the film, it's great to know this will help raise awareness of cystic fibrosis. I'm very excited to show it to my friends as I finally have an answer to the 'What is CF?' question: I can just let them watch the video and all will be answered! I think they may be in shock about how much stuff I have to do and what I have to go through. As much as they try to understand I don't think they ever really imagined how much I have to do. It will finally feel like a weight off my shoulders and I won't fear the 'What is CF?' question any more.

Jordan McKinlay

"I’d originally approached the team for this film hoping to gain knowledge in the media aspect of theatre. Theatre is very important to me, particularly sharing stories about CF; and I hope to one day create my own work – with my own company. I hope that other CF patients, like me, will find this a relief in some sense; so that their friends will be able to understand fully all the different ways different patients are affected. I’ve always been treated as an average person by friends and family, and I hope this film will teach others that that’s the way we want to be treated: just like everyone else."
Holly, Ben, Jordan and Cicely are just three of the thousands of teenagers with cystic fibrosis, each with their own lives and their own story to tell

We want you all to share your story, too.

If you’ve been inspired by ‘…the rest is up to me’ we’d love it if you could do your own short videos about your own experience with cystic fibrosis. Upload them to YouTube, share them on Twitter with the hashtag #cfteens and we’ll collate them all on our YouTube channel.

They can be as short as 10 seconds, but please no longer than three minutes! And film them on your mobile, camera, however – it’s what you say about your own experience that is important.

We’re shouting loud about cystic fibrosis and with your voice, we’ll be shouting even louder.

No comments:

Post a Comment