#cftrust

[philminns]

A day of remembering and reflection. Not dwelling on the sadness and pain but remembering the amazing happy memories of a life once lived, never to be forgotten. Today would have been my late partner Tim and his twin brother Martin’s 50th birthday. Reaching 45 for Tim and 44 for Martin was an incredible achievement for the two, who from 18 months old lived with Cystic Fibrosis and all the challenges that the disease gives daily. They weren’t expected to make their 20s so the full lives they lived, achievements they made until their mid 40s defied the odds. Happy 50th Moose and Tronq, I am sure you are both enjoying a Gin and Drambuie Queen Mother styli wherever you are. ❤️🐴🐴🌈🐴🐴❤️#cftrust #livelifetothefullest https://www.instagram.com/p/CrjOWIlosv9/?igshid=NGJjMDIxMWI=

[anna-bellend]

The time of year has come again for me to attempt to raise awareness for a condition I face every second of every day.🌹After finishing my first year of university I’ve come to realise just how much I depended on my parents when it comes to my health and how difficult it actually is to manage daily. I’ve also learnt that not every person I meet in my life is going to understand my health requirements and deal with it in a mature way; but that doesn’t matter because at the end of the day I have an amazing support network with family/friends who go to the ends of the earth to put up with me.❤️ Cystic fibrosis is an inherited condition in which the lungs and digestive system can become clogged with thick, sticky mucus. It can cause problems with breathing and digestion from a young age. Over many years, the lungs become increasingly damaged and will eventually stop working properly. It's estimated that 1 in every 2,500 babies born in the UK has Cystic Fibrosis. A number of treatments are available to help reduce the problems caused by the condition, but unfortunately average life expectancy is reduced for people who suffer from it. Possible treatments include: • Antibiotics to prevent and treat chest infections • Medicines to make the mucus in the lungs thinner and easier to cough up • Medicines to widen the airways and reduce inflammation • Special techniques and devices to help clear mucus from the lungs • Medicines that help the person absorb food better • Following a special diet and taking supplements to prevent malnutrition A lung transplant may eventually be needed if the lungs become fatally damaged. There is always extensive research happening into new treatments and therapies for CF sufferers but this can only carry on and progress through fundraising programs and donations from the public. Simply text 'CFTG14' and your chosen amount (£3/£5/£10) to 70070, call the Cystic Fibrosis trust donation hotline on 0300 373 1040, or, head to the link in my bio to donate.💛🌹 #cysticfibrosis #cf #cysticfibrosisawareness #cysticfibrosisawarenessmonth #cftrust #cysticfibrosisrelateddiabetes #cfrd @cftrustuk @cf_foundation (at Telscome Cliffs)

[blossombeauty21]

#cftrust #tbsahconsultant https://www.instagram.com/p/CQN7KV6hyXf/?utm_medium=tumblr

[phoenixfireafterdark]

Thank you @freyliving @peterfreylife @thefreylife for the lovely stickers! 😍 Mary's watercolours are really cool. 😀 Visit their store http://thefreylife.com/store Or store.thefreylife.com #thefreylife #freyliving #peterfreylife #ollyfrey #cysticfibrosis #cftrust #cffoundation #cfresearch #cfcure #cfsurvivors #dowhatyouthinkyoucantdo #art #watercolor #stickers #freylifestore #maryfrey #peterfrey (at Brighton)

[secertgamer-blog]

C Y S T I C F I B R O S I S W E E K

So this week (17-23 June 2019) is CF week (it’s a day late as I’ve been working)

This week is dedicated to raising awareness, celebrating what we can achieve together, and wearing yellow (even if you hate it!) to secure a brighter future for people with cystic fibrosis 💛

Cystic fibrosis (CF) is a genetic condition affecting more than 10,400 people in the UK. You are born with CF and cannot catch it later in life, but one in 25 of us carries the faulty gene that causes it, usually without knowing.

Cystic fibrosis causes the body to produce thick mucus, which can have a wide range of effects. Everyone with CF will have a slightly different variety and severity of symptoms. Take a look at our interactive body to find out more and explore how CF affects the lungs and digestive system, and about the other complications it can cause.

We are fighting for a life without CF. CF destroys people’s lives and takes people away from us, sometimes before they’re even a teenager. Please, if you can, donate to the CF trust UK to find life changing research to find innovative treatments and one day, even a cure for CF. #cftrust #cysticfibrosis #fivefeetapart #cf #makeup #mua #awareness #eyeshadow #makeupartist

[mandyjane-lifedesign]

My Trikafta story

My Trikafta story began 4 days ago. I was excited but didn't want to get too ahead of myself. I had heard reports of Trikafta (called Kaftrio in the UK) making huge positive (mostly) changes and hoped this would be the same for me. For the previous 4-5 months I was on Symkevi and Kalydeco. I noticed a slight difference but nothing to write home about. So with much trepidation, I took my first two tablets and got on with my day. Within a few hours I noticed a lot of gunk coming out of my lungs. Cystic Fibrosis causes mucus to build up in the lungs. Sorry for the details but I coughed up loads and normally, I would have had to do hours pf physio to achieve anything near to this "purge". I began to think this drug might just work for me. Today, 4 days later, I checked my lung function for the first time and my results were astounding. My lung function has increased by around 25%. It's hard to believe after so many years of struggling to breathe. I didn't realise quite how much I struggled until I was able to breathe again. My mother passed away from Cystic Fibrosis related problems in 2000 and it would have been wonderful if she could've benefitted too. I have been receiving emails from the CF clinic advising of changes. Women with CF are now falling pregnant unexpectedly. Before falling pregnant was impossible due to such poor health but Trikafta is resulting in women with CF being so well that they are now able to fall pregnant. Cystic #CF #CFtrust #cftrmembrane #chronicillness #cysticfibrosis #genetherapy #illness #Kaftrio #Trikafta #vertex Read the full article

[pharmaphorumuk]

As CHMP backs Vertex’ CF triple, campaigners plead for speedy UK deal

Cystic fibrosis patient groups in the UK are celebrating a recommendation by the EMA’s human medicines committee to approve Vertex’ three-drug therapy Kaftrio – but fear another lengthy delay for access.

There’s a strong precedent for that concern, given that it took four years from the EMA approval of Vertex two-drug CF therapies Orkambi and Symkevi for the drug to be made available to patients, amid an acrimonious face-off between the UK government and the drugmaker over price.

On Friday, the Committee for Medicinal Products for Human Use (CHMP) issued a positive opinion on the use of Kaftrio (tezacaftor/ivacaftor/elexacaftor) in CF patients aged 12 or over who have two copies of the F508del mutation gene, one copy of F508del and a minimal function (MF) mutation.

It is the first drug that works in patients with the F508del and MF mutations, who account for a large proportion of the overall CF population, and in trials led to improved lung function as well as quality of life score.

If Kaftrio is approved by the European Commission, Vertex estimates that up to 10,000 patients in Europe will be “newly eligible” for treatment with the drug.

Last October, the drug was approved in the US for the same patient groups under the Trikafta brand name and has grown at a phenomenal pace, making sales of $895 million in the first three months of 2020.

This is a critical step on the road to ensuring that the Vertex triple therapy is licensed for all who would benefit from it and available on the NHS without delay. We will not stop until life-saving drugs are available for everyone with cystic fibrosis in the UK. https://t.co/iU0QIK0Dit

— Cystic Fibrosis Trust (@cftrust) June 26, 2020

CF Voices, a group set up by parents of children with CF, has written to both NHS England and Vertex to urge an early deal to add Kaftrio to the currently available drugs for the disease as soon as the EMA formally approves the drug – which typically occurs within a couple of months of a CHMP opinion.

“Kaftrio offers a future, previously thought impossible, to our families and thousands of people with CF,” says the group in the letters, noting that the drug “finally offers people real hope – hope for a healthy, longer future – perhaps even a normal life expectancy, for up to 90% of the community with future label extensions.”

CF Voices says it is imperative that there is no delay in making the new drug available to patients, and warns that the “media circus, which caused so much stress for the community across years during the Orkambi campaign, kicked into overdrive again recently.”

Last year, NHS England finally agreed a deal with Vertex covering all the company’s then-licensed CF medicines after years of impasse, making the drugs available to around 5,000 patients.

Campaigners were incensed that in the intervening period – some four years after EU approval – patients died and suffered unnecessarily as they were unable to receive the drugs.

An article in the Daily Mail says that the NHS is already poised to announce a financial deal for the medicine, perhaps as early as next week.

The post As CHMP backs Vertex’ CF triple, campaigners plead for speedy UK deal appeared first on .

from https://pharmaphorum.com/news/as-chmp-backs-vertex-cf-triple-campaigners-plead-for-speedy-uk-deal/

[foodforyourbody]

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[anna-bellend]

The time of year has come again for me to attempt to raise awareness for a condition I face every second of every day.🌹After finishing my first year of university I’ve come to realise just how much I depended on my parents when it comes to my health and how difficult it actually is to manage daily. I’ve also learnt that not every person I meet in my life is going to understand my health requirements and deal with it in a mature way; but that doesn’t matter because at the end of the day I have an amazing support network with family/friends who go to the ends of the earth to put up with me.❤️ Cystic fibrosis is an inherited condition in which the lungs and digestive system can become clogged with thick, sticky mucus. It can cause problems with breathing and digestion from a young age. Over many years, the lungs become increasingly damaged and will eventually stop working properly. It's estimated that 1 in every 2,500 babies born in the UK has Cystic Fibrosis. A number of treatments are available to help reduce the problems caused by the condition, but unfortunately average life expectancy is reduced for people who suffer from it. Possible treatments include: • Antibiotics to prevent and treat chest infections • Medicines to make the mucus in the lungs thinner and easier to cough up • Medicines to widen the airways and reduce inflammation • Special techniques and devices to help clear mucus from the lungs • Medicines that help the person absorb food better • Following a special diet and taking supplements to prevent malnutrition A lung transplant may eventually be needed if the lungs become fatally damaged. There is always extensive research happening into new treatments and therapies for CF sufferers but this can only carry on and progress through fundraising programs and donations from the public. Simply text 'CFTG14' and your chosen amount (£3/£5/£10) to 70070, call the Cystic Fibrosis trust donation hotline on 0300 373 1040, or, head to the link in my bio to donate.💛🌹 #cysticfibrosis #cf #cysticfibrosisawareness #cysticfibrosisawarenessmonth #cftrust #cysticfibrosisrelateddiabetes #cfrd @cftrustuk @cf_foundation (at Telscome Cliffs)

[thecaregiverspace]

As part of Cystic Fibrosis awareness week I'll be focusing on some of the details of the condition, including the various medicines that individuals with C.F have to include in their day to day lives. #cf #cysticfibrosis #cysticfibrosisawareness #medicine #treatments #cftreatment #illustration #sketch #sketchbook #cfaware #community #health #chronicillness #chronic #meds #cflife #disability #hope #findacure #cftrust #cffoundation #facesofcare ( #📷 @spacediver15 ) https://ift.tt/2wRrmPk

[sportymamasemma]

We raised £810.49 for @cftrust at last weeks West Ham legends evening huge thanks go to the amazing @alvinmartin58 a great night! #charity #westham @cftrustuk @cflumps @cf_foundation

[alanhilltrust]

Cystic Fibrosis - a fight we can win ...

[breathingoneverest]

Meet 6yr old Jesse, who like many CFers, must take many pills and other medicines  every day just to stay well. This video went viral with over 650,000 views in just a few days! Turns out people are just as impressed with Jesse’s compliance ( and ability to swallow 9 pills at once) as we are! 

Keep it up Jesse! -Team BOE 

[anna-bellend]

The time of year has come again for me to attempt to raise awareness for a condition I face every second of every day.🌹After finishing my first year of university I’ve come to realise just how much I depended on my parents when it comes to my health and how difficult it actually is to manage daily. I’ve also learnt that not every person I meet in my life is going to understand my health requirements and deal with it in a mature way; but that doesn’t matter because at the end of the day I have an amazing support network with family/friends who go to the ends of the earth to put up with me.❤️ Cystic fibrosis is an inherited condition in which the lungs and digestive system can become clogged with thick, sticky mucus. It can cause problems with breathing and digestion from a young age. Over many years, the lungs become increasingly damaged and will eventually stop working properly. It's estimated that 1 in every 2,500 babies born in the UK has Cystic Fibrosis. A number of treatments are available to help reduce the problems caused by the condition, but unfortunately average life expectancy is reduced for people who suffer from it. Possible treatments include: • Antibiotics to prevent and treat chest infections • Medicines to make the mucus in the lungs thinner and easier to cough up • Medicines to widen the airways and reduce inflammation • Special techniques and devices to help clear mucus from the lungs • Medicines that help the person absorb food better • Following a special diet and taking supplements to prevent malnutrition A lung transplant may eventually be needed if the lungs become fatally damaged. There is always extensive research happening into new treatments and therapies for CF sufferers but this can only carry on and progress through fundraising programs and donations from the public. Simply text 'CFTG14' and your chosen amount (£3/£5/£10) to 70070, call the Cystic Fibrosis trust donation hotline on 0300 373 1040, or, head to the link in my bio to donate.💛🌹 #cysticfibrosis #cf #cysticfibrosisawareness #cysticfibrosisawarenessmonth #cftrust #cysticfibrosisrelateddiabetes #cfrd @cftrustuk @cf_foundation (at Telscome Cliffs)

[cftwo]

Getting Nosey about CF with Oli and Nush

A short film made for the Cystic Fibrosis Trust (www.cftrust.org.uk) by Absolutely Cuckoo, to help children with Cystic Fibrosis understand their condition and to explain to other children what Cystic Fibrosis is. If you'd like to make a donation to the CF Trust to contribute towards the costs of making this film, you can do so through Oli and Nush's fundraising page www.virginmoneygiving.com/oliandnush

[katiemalikafs]

Wrapped up a successful filming of CF yoga videos yesterday for @cftrustuk ! Filmed 4 separate yoga practices for different abilities on day 1 and 5 CF targeted "yoga bites" on day 2. If anyone needs me I'll be lazing under a tree in a park, stuffing my face with all the cheese in London. #balance #truth #yoga #cfwarrior #pactster #cftrust #justbreathe (at TechHub)