Saturday 6 June 2015

The Power of Us - CF Week 2015

Today marks the start of CF Week 2015, and this year our theme the Power of Us looks to bring the whole CF community together to help us spread the word and work as one in the fight against cystic fibrosis. To kick things off Emma Lake, our Community Manager who also lives with CF, tells of her experience and how sharing her story (and those of others) has played a key role in achieving great things for the CF community.

My husband thinks I am a super hero. He calls me sputum girl. Sometimes he calls me a mutant. I'm not sure what my superpower is, but if the X-Men give me a call I won't say no.

In a way my husband is right. I do have a superpower. So does he. So do you.

Our superpower is our stories. Having worked at the Cystic Fibrosis Trust for nearly 12 years, I know that it is our stories that are the real drivers for change.  The Power of Us is the greatest tool we have.

The fact that Kalydeco is now funded is not just down to the Cystic Fibrosis Trust. True, they played their part, but it was our stories, our lives, our voices that made the difference. In this new future of personalised medicines we have a vital role to play.

The Enough is Enough campaign would have achieved nothing, without our community behind us every step of the way. From signing the petition and writing letters to talking to the media and waving placards, we are unstoppable when we use our own experiences to generate a change.

I sit on the Clinical Reference Group for Cystic Fibrosis as a patient representative (or “person representative” as I prefer to call myself). Our community is also represented by parents of people with cystic fibrosis and we are more than just a tickbox exercise. We are part of a group who essentially decide the future of CF care and I and the parent reps are influencing those decisions, using not just our knowledge and experience, but yours too.

There are countless other examples that I (and you) could mention, such as approval of Mannitol, Colobreathe and the Tobi Podhaler. We have access to all these inhalers, because we used the power of us. We were so good at using it that people had to listen.

So now it’s time for our community to put on our capes and manifest our superpowers. Words are powerful. Don't be afraid to shout them loud!

Join in with CF Week 2015 by sharing your story across social media (and beyond) with the hashtag #PowerOfUs.

We're also challenging you, our community, to talk to a person a day about CF. From someone new to someone you may have mentioned it too in the past.

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