Thursday 28 March 2013

Berniece Phillips has cystic fibrosis and gives an insight into what cystic fibrosis means to her

Berniece Phillips has cystic fibrosis and is one of the faces of Cystic Fibrosis Trust rebrand

My name is Berniece Phillips, I'm 27 years old, living in Wirral. I was diagnosed with CF at the age of three. My whole life has consisted of a cocktail of medication from tablets, physio treatments, hospital visits and hospital admissions. I find it hard to find the words to explain my day to day life with cystic fibrosis, so I've put it in a poem.

A day in a life of living with cystic fibrosis

You look at me and think I'm the same
You look at me like I'm in no pain
Until that second your hear me cough and splutter
Then you stop, stare and mutter

With every long deep breath
With the pains throughout my chest
Sometimes it gets to much
Where I need to stop and rest

There are times I feel tired, exhausted and sore
And times I feel I can't take it anymore
I smile I laugh I pretend I'm ok
Truthfully that's how I make it day by day

Imaging my life without this disease
My life would practically be a breeze
No more fifty tablets a day
Or one hour treatments to make me feel ok

Throughout my battles I have realised this
Without this disease there's a lot in my life I'd miss
From all the CF friends I've made, loved and lost
Who have battled against this disease and their life ended early at a great loss

When I feel like I can't cope
I think of my friends and it gives me hope
With this illness and all it can bring
It's still my life and I wouldn't change a thing
They say having a baby is a big 'No No'
As the percentage who have them is really low

I know I was lucky
I know I was blessed
When those two pink lines
Came up on the test

I had low spiro's
I was poorly and I'd puke
But none of that mattered
when I got my Luke

Cystic Fibros/is unfortunately what my life holds
With endless coughs, tablets, treatments and colds
But with help from Cystic Fibrosis Trust, research and new information to share
Together we’ll make lots of people cystic fibrosis aware!

I hope this has given you an insight into a day of my life living with CF. I was honoured to have been asked to take part in the new brand CF photo shoot, it was a fun day and I enjoyed being involved so hopefully this will raise more awareness of cystic fibrosis.

Tuesday 26 March 2013

Alex Stobbs explains why he supports the Cystic Fibrosis Trust and why he’s looking forward to the future.

Hi, I'm Alex, I have cystic fibrosis and I turned 23 this year, you might remember me from the book about my life ‘A boy called Alex’.

Having left university last summer, I'm now living in London with my two brothers and preparing for life as a musician. My health has fluctuated wildly over the last four years, so this year I'm focussing on getting stable! Without the burden of a degree and the intensity of singing seven services a week in a choir, I seem to be reaping the benefits of a calmer life!

All my life my family and I have tried to support the Cystic Fibrosis Trust as best we can. We are part of thousands all over the country who are constantly fundraising in order to continue the excellent research taking place in the UK and abroad. Such research has meant that positive stories about cystic fibrosis are becoming more and more common. The introduction of Kalydeco has been transformative for many  patients with G551D, some of whom are waiting for a lung transplant.

The re-launch of the Cystic Fibrosis Trust as a brand will undoubtedly raise the profile of the Trust as it bids to continue raising awareness of a disease which has such a devastating effect on so many people. I hope you'll agree that the Trust does outstanding work..I just hope that this continues so that as many people as possible can learn about - and support - their incredible efforts.