Help cystic fibrosis sufferers survive the dangers of winter
While families across Britain look forward to the festive period, CF sufferers – whose lungs are clogged with mucus – are at their most vulnerable to infections.
The Daily Express today unveils the latest chapter of our Christmas crusade for the CF Trust.
This year we stood shoulder to shoulder with campaigners in our fight to see US wonder drugs Orkambi and Symkevi made available for free on the NHS.
And this Yuletide we are urging kind-hearted readers to donate to the charity, which provides financial and emotional support for Britain’s 10,500 sufferers.
Dr Keith Brownlee, of the CF Trust, said: “CF is a devastating and complex condition that makes it harder for people to stay healthy, and staying healthy can be especially difficult during the cold winter months. The festive period can be an expensive time for us all, but the cost of living for people with CF can be considerably higher.
“As well as this, the cold increases peoples’ susceptibility to chest infections and can mean long periods in hospital. This puts a lot of added pressure on families.”
Trust CEO David Ramsden said: “There are added pressures – as well as extra bank holidays – and it can be difficult if your usual payments and shopping routine are disrupted.
“We offer health and wellbeing grants up to £350 to help people living with cystic fibrosis buy essential items such as fridges, beds, flooring, new curtains or mattresses.
“Although items like this may seem small or insignificant, they can make a huge impact on people’s health and day-to-day life.”
The run-up to Christmas will see us reveal different aspects of the incredible work of the CF Trust.
We will highlight what is being done now to treat sufferers – as well as reveal what the future could hold thanks to research by charities like the Trust.
We hope you will be inspired to donate. Just £15 could pay for its helpline team to provide practical support to a parent whose child has been diagnosed with CF.
And £150 could help with the extra stress of an unexpected hospital admission.
Mum-of-one Carlie Pleasant, 29, whose CF diary has featured in our pages, said: “I hope readers generously donate to the charity and help them keep supporting the incredible work they do.”
A DOTING father has told the Daily Express how the little things the CF Trust do to have made a huge difference to his daughter’s life.
Jordan Walker, 25, tries his best to keep two year-old Isabella warm, healthy and fed high-calorie food as CF sufferers do not absorb nutrients and fat as efficiently as those without the cruel condition.
Jordan, from Barnsley, South Yorks, told us: “Winter is especially hard for CF-ers.
“Isabella spends most of the time on antibiotics for infections and she’s had a few stays in hospital for a few weeks at a time to have intravenous (IVs) antibiotics where the medicines are fed by a tube straight into the vein.
“Stays in hospital are a huge financial burden – car parking fees mount up as well as the cost of expensive hospital food. Added to this, I need to take time off work.
“I’m a single parent and the grants the CF Trust offered provide a lifeline at really difficult times. They gave us a grant for a cooker and a washing machine.
“Isabella sweats a lot because of her CF and means she can never wear clothes more than once and I have to change her beds sheets a lot.
“I just want to provide for the needs of Isabella the best I can.”
A CF SUFFERER has told the Daily Express how a holiday funded by the CF trust drastically helped her mental struggle with the genetic disease.
Amy Davies, 28, from Walsall, West Midlands, told us: “The CF Trust has given me a grant towards a holiday I could never afford myself.
“That gave me something to look forward to. Not only to relax it but it helped me mentally, taking some of the pressure off just doing my daily treatments.
“The Trust has also helped me buy a new fridge freezer as I need it to store my medication; without it my medications wouldn’t work.
“Winter is a difficult time for me, I often feel worse because of all the colds and bugs going around.
“I feel anxious being around other people as I don’t want to catch anything, so I try and keep my distance.
“For most it’s a common cold which you’ll recover quickly from but for me it will mean having to go to hospital for antibiotics.
“This happened to me last year. My friend had got a sore throat which I caught, it went to my chest and I was really poorly and missed four weeks from college.
“It can be very frustrating and makes me stressed to have to keep missing college and other important life events.
“Doing treatment also makes me feel isolated, it can take a long time – around two hours each day before I leave the house.
“I feel lonely and feel I’m missing out on everyday life as my treatment takes so long.
“I’m really grateful to the support the Trust provides which helps me to live my life as best as life as possible.”
CF STRICKEN Michael Baron claims without the CF Trust’s financial and mental support he might not be alive.
Michael, 21, from Lancaster, told us: “The CF Trust welfare grants have played a crucial role in our lives for over 10 years.
“When I was 12, they first paid for me to have a trampoline at home, which meant I could build up my lung function.
“This got me fit enough to take up gymnastics and rollerblading and I became a professional rollerblader and a national gymnastics champion for Wales.
“More recently, I have used the grants to help me to move out and support me living on my own.
“My lung function has dropped to the low 30s, and I couldn’t do things like making my bed and shutting the curtains at night because I was so tired.
“I also have CF related arthritis and needed a different mattress so the grant paid for a memory foam mattress.
“By improving my physical symptoms,I am then more able to do my physio and put extra effort into my improving my lung function which is steadily rising thanks to the equipment they’ve helped provide.
“Having the Trust’s financial help was like a comfort blanket. In the winter my symptoms are much worse – like waking up with icicles in your throat!
“The cold air gives me a much chestier, drier cough and it can feel like you’re breathing in sand.
“But knowing the Trust is there gives me so much support and mental strength. Without them I wouldn’t have been able to move out and live my life to the full.
“My mum’s often said without the Trust I might not be alive now and certainly wouldn’t have my quality of life.”
COMMENT by Crispin Blunt
I am delighted to be supporting this year’s Daily Express Christmas crusade for the Cystic Fibrosis Trust.
Three years ago my young constituent Jessica Cranfield Smith and her parents came to see me, seeking my support in their fight for life-saving medicines to help not only their daughter but many other youngsters with CF.
The Trust has played a vital role and I was proud to campaign alongside it and debate this important issue with my colleagues across the political spectrum in Parliament in the fight for access to life-saving drugs for CF sufferers.
The first step in getting access to Orkambi and the Vertex family of drugs has been achieved.
But there is much more to be done as other pharmaceuticals become available, and in research so new pharmaceuticals can become available.
It’s fantastic to see the Daily Express helping to raise essential funds so that the CF Trust can continue to actively carry on their life-enhancing and life-extending work. I wholly support their efforts.
• Crispin Blunt is the Conservative candidate for Reigate
This Christmas you can make a difference to the lives of people with cystic fibrosis by giving to our Daily Express Christmas appeal.
To donate by text, please text EXPRESS 5 or EXPRESS 10 to 70500 to donate £5 or £10.
You can also send cheques payable to “Cystic Fibrosis Trust” to: Cystic Fibrosis Trust, Daily Express CF Appeal, One Aldgate, London, EC3N 1RE
Or donate online at: www.cysticfibrosis.org.uk/Express
Your support could be life-changing for CF sufferers and their families. Thank you.
Source: Read Full Article