Cystic Fibrosis Trust
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Shanique talks about the forum | Your Baby's CF Diagnosis
Shanique, whose six-month-old son Thiago has #cysticfibrosis (#CF), shares how our online community has supported her during their diagnosis journey.
Join the conversation at forum.cysticfibrosis.org.uk
Unite with us for a life unlimited by cystic fibrosis.
Visit www.cysticfibrosis.org.uk
zhlédnutí: 55

Video

Come with us to soft play | Your Baby's CF Diagnosis
zhlédnutí 51Před 21 dnem
Unite with us for a life unlimited by cystic fibrosis. Visit www.cysticfibrosis.org.uk
Arlo's story | Your Baby's CF Diagnosis
zhlédnutí 206Před 21 dnem
Arlo is nearly three years old and was diagnosed with #cysticfibrosis (#CF) shortly after birth. We talked to his parents, Nicole and Martyn, about their family's diagnosis story, and the exemplary care they've received from their CF team since then. Unite with us for a life unlimited by cystic fibrosis. Visit www.cysticfibrosis.org.uk
Nicole and Martyn talk about their reactions to Arlo's diagnosis | Your Baby's CF Diagnosis
zhlédnutí 61Před 21 dnem
A diagnosis of #cysticfibrosis (#CF) can come as a shock, but however you're feeling, there's no right or wrong way to feel. Most parents will find out their child has cystic fibrosis (CF) shortly after birth, after the routine heel prick test. If there is no history of CF in your family, the news can come as a shock. The birth of a new baby brings with it a mixture of emotions, which can also ...
Nicole and Martyn discuss childcare and the Individual Healthcare Plan | Your Baby's CF Diagnosis
zhlédnutí 60Před 21 dnem
Starting nursery, pre-school or with a childminder or nanny can offer your child lots of exciting opportunities in terms of their social, emotional and cognitive development. If you're thinking about childcare, you might have lots of questions about how to find the right childcare setting for you and your child. We've got plenty of information for you at www.cysticfibrosis.org.uk/life-with-cyst...
Nicole and Martyn discuss talking about CF to friends and family | Your Baby's CF Diagnosis
zhlédnutí 57Před 21 dnem
Talking to friends and family about your child’s #cysticfibrosis is something many parents find challenging. It can be hard to describe how you are feeling, the impact of your child’s diagnosis, and you may be faced with lots of questions from well-meaning family and friends. In this video Nicole and Martyn, whose son Arlo has #CF, discuss talking about his diagnosis to friends and family, and ...
Tilly interviews her parents about her CF diagnosis | Your Baby's CF Diagnosis
zhlédnutí 178Před 21 dnem
Tilly is 15 years old and has #cysticfibrosis (#CF). In this video, she interviews her parents about her diagnosis story, and what it's been like to bring up a child with CF. Unite with us for a life unlimited by cystic fibrosis. Visit www.cysticfibrosis.org.uk
Dhyuti's story | Your Baby's Diagnosis
zhlédnutí 89Před 21 dnem
Dhyuti is eight months old and was diagnosed with CF shortly after birth. We talked to her parents, Anapuma and Mithun, about the journey they've been on since her diagnosis - and the joy Dhyuti has brought to their lives! Unite with us for a life unlimited by cystic fibrosis. Visit www.cysticfibrosis.org.uk
CF Week 2024: Stuart's story
zhlédnutí 132Před měsícem
For 60 years we've worked together, sharing moments of frustration, despair and hope, overcoming challenges, and celebrating breakthroughs. Always learning and moving forward.  This #CFWeek, we’re reflecting on how far we’ve come and looking to the future. Because we won’t stop until #cysticfibrosis does. Stuart is one of four siblings, of which three have #CF, so the Trust was a big part of hi...
CF Week 2024: Thiago's story
zhlédnutí 274Před měsícem
For 60 years we've worked together, sharing moments of frustration, despair and hope, overcoming challenges, and celebrating breakthroughs. Always learning and moving forward.  This CF Week, we’re reflecting on how far we’ve come and looking to the future. Because we won’t stop until CF does. Thiago was diagnosed with CF at five weeks old. Now eight months old, his mum Shanique reflects on thei...
Cystic Fibrosis Trust research support offer
zhlédnutí 153Před měsícem
Cystic Fibrosis Trust funds and supports research to ensure that everyone with CF in the UK can live a long and full life. If you are an innovator, our research support offer can support you at every stage of your research pipeline, streamlining and simplifying the process. To find out more, visit www.cysticfibrosis.org.uk/researchoffer Unite with us for a life unlimited by cystic fibrosis. Vis...
No day off: Jon's story | #CFTruths
zhlédnutí 261Před měsícem
CF never lets you have a day off. Cystic fibrosis (CF) is a life-limiting, genetic condition without a cure. It dominates thousands of lives every day. People with CF have to do hours of treatments every day, just to stay well. Taking up to 150 tablets a day. Following special high-calorie diets. Daily exercise and respiratory physio. Plus regular clinic appointments, and weeks in hospital to f...
No day off: Charlotte's story | #CFTruths
zhlédnutí 100Před měsícem
CF never lets you have a day off. Cystic fibrosis (CF) is a life-limiting, genetic condition without a cure. It dominates thousands of lives every day. People with CF have to do hours of treatments every day, just to stay well. Taking up to 150 tablets a day. Following special high-calorie diets. Daily exercise and respiratory physio. Plus regular clinic appointments, and weeks in hospital to f...
Cystic Fibrosis Trust: Since 1964 | 60th Anniversary
zhlédnutí 461Před 4 měsíci
For 60 years, we’ve overcome challenges and celebrated breakthroughs. Always learning and moving forward. And we won't stop until CF does. Since 1964, Cystic Fibrosis Trust has been here to support everyone affected by #CF. Hear from Jonathan, Rob, Charlotte and Stuart about their lives with CF over the years - and how things have changed. Unite with us for a life unlimited by #cysticfibrosis. ...
Managed Migration: being moved to Universal Credit | Support
zhlédnutí 456Před 4 měsíci
Please note that on 19 April 2024 the Government announced, as part of a range of changes to the Welfare System, that all migration notices will now be sent by the end of December 2025. This means that ESA-only and ESA/Housing Benefit claimants may be contacted earlier than expected. We will keep an eye on this in case the timetable changes again. Have you heard about Managed Migration to #Univ...
How can you get involved and influence the work of the Trust and future research? | CF LIVE
zhlédnutí 225Před 4 měsíci
How can you get involved and influence the work of the Trust and future research? | CF LIVE
Paediatric CF care - Insights from the UK CF Registry and our patient experience survey | CF LIVE
zhlédnutí 143Před 6 měsíci
Paediatric CF care - Insights from the UK CF Registry and our patient experience survey | CF LIVE
Flexible working at the Trust | Our culture
zhlédnutí 171Před 6 měsíci
Flexible working at the Trust | Our culture
CEO David Ramsden's end of year message | 2023
zhlédnutí 108Před 7 měsíci
CEO David Ramsden's end of year message | 2023
Researcher profile: Dr Emily Granger | RESEARCH
zhlédnutí 103Před 7 měsíci
Researcher profile: Dr Emily Granger | RESEARCH
🌟 Dame Judi Dench cordially invites you to join us for the 21st Carols by Candlelight! ✨ | FESTIVE
zhlédnutí 237Před 7 měsíci
🌟 Dame Judi Dench cordially invites you to join us for the 21st Carols by Candlelight! ✨ | FESTIVE
Researcher profile: Hollie Leighton | RESEARCH
zhlédnutí 68Před 7 měsíci
Researcher profile: Hollie Leighton | RESEARCH
Unite with us this festive season | Festive 2023
zhlédnutí 261Před 8 měsíci
Unite with us this festive season | Festive 2023
UK Cystic Fibrosis Conference | CF LIVE
zhlédnutí 198Před 9 měsíci
UK Cystic Fibrosis Conference | CF LIVE
Session 4: Underlying cause of CF & closing remarks | UK Cystic Fibrosis Conference 2023
zhlédnutí 441Před 9 měsíci
Session 4: Underlying cause of CF & closing remarks | UK Cystic Fibrosis Conference 2023
Session 3: CF Lung infections | UK Cystic Fibrosis Conference 2023
zhlédnutí 203Před 9 měsíci
Session 3: CF Lung infections | UK Cystic Fibrosis Conference 2023
Session 2: Symptoms and complications of cystic fibrosis | UK Cystic Fibrosis Conference 2023
zhlédnutí 287Před 9 měsíci
Session 2: Symptoms and complications of cystic fibrosis | UK Cystic Fibrosis Conference 2023
Welcome to UKCFC and opening session | UK Cystic Fibrosis Conference 2023
zhlédnutí 578Před 9 měsíci
Welcome to UKCFC and opening session | UK Cystic Fibrosis Conference 2023
Rita and Asra's story | Living in poverty with #cysticfibrosis
zhlédnutí 527Před 9 měsíci
Rita and Asra's story | Living in poverty with #cysticfibrosis
NICE modulator appraisal: what does this mean for the CF community? | Access to medicines
zhlédnutí 351Před 10 měsíci
NICE modulator appraisal: what does this mean for the CF community? | Access to medicines

Komentáře

  • @thetaylorfamliy2099
    @thetaylorfamliy2099 Před 19 dny

    I’m the healthiest kid in the world with it

  • @azukarzuchastux8066
    @azukarzuchastux8066 Před 22 dny

    1 Corinthians 15:3-4 KJV 3 For what I received I passed on to you as of first importance that Christ died for our sins according to the Scriptures, that he was buried, that he was raised on the third day according to the Scriptures John 3:16 16 For God so loved the world, that he gave his only begotten Son, that whosoever believeth in him should not perish, but have everlasting life Ephesians 2:8-9 8 For by grace are ye saved through faith; and that not of yourselves: it is the gift of God: 9 Not of works, lest any man should boast ROMANS 10:13 For “whosoever shall call upon the name of the Lord shall be saved.” 
Acts 2:38 - Then Peter said unto them, Repent, and be baptized every one of you in the name of Jesus Christ for the remission of sins, and ye shall receive the gift of the Holy Ghost

  • @azukarzuchastux8066
    @azukarzuchastux8066 Před 22 dny

    1 Corinthians 15:3-4 KJV 3 For what I received I passed on to you as of first importance that Christ died for our sins according to the Scriptures, that he was buried, that he was raised on the third day according to the Scriptures John 3:16 16 For God so loved the world, that he gave his only begotten Son, that whosoever believeth in him should not perish, but have everlasting life Ephesians 2:8-9 8 For by grace are ye saved through faith; and that not of yourselves: it is the gift of God: 9 Not of works, lest any man should boast ROMANS 10:13 For “whosoever shall call upon the name of the Lord shall be saved.” 
Acts 2:38 - Then Peter said unto them, Repent, and be baptized every one of you in the name of Jesus Christ for the remission of sins, and ye shall receive the gift of the Holy Ghost

  • @azukarzuchastux8066
    @azukarzuchastux8066 Před 23 dny

    1 Corinthians 15:3-4 KJV 3 For what I received I passed on to you as of first importance that Christ died for our sins according to the Scriptures, that he was buried, that he was raised on the third day according to the Scriptures John 3:16 16 For God so loved the world, that he gave his only begotten Son, that whosoever believeth in him should not perish, but have everlasting life Ephesians 2:8-9 8 For by grace are ye saved through faith; and that not of yourselves: it is the gift of God: 9 Not of works, lest any man should boast ROMANS 10:13 For “whosoever shall call upon the name of the Lord shall be saved.” 
Acts 2:38 - Then Peter said unto them, Repent, and be baptized every one of you in the name of Jesus Christ for the remission of sins, and ye shall receive the gift of the Holy Ghost

  • @MrChangeordie
    @MrChangeordie Před 24 dny

    They be so quick to tell u so much about diseases but never do they have a cure...yeah here take medication 💊💊💉💊

  • @lesleyblaikie7031
    @lesleyblaikie7031 Před 24 dny

    Thanks for sharing your story

  • @gamerswebUK
    @gamerswebUK Před měsícem

    My amazing granddaughter Naomi was only 13 when she took part in this awesome video and is still singing loud and proud❤

  • @tracysue1747
    @tracysue1747 Před měsícem

    Awww so SO sorry to hear that. God bless you sir. ❤️🙏🏻

  • @kaylienicole69x3
    @kaylienicole69x3 Před měsícem

    😮 we we q m

  • @nev3i
    @nev3i Před měsícem

    Baby Thiago will be just fine 🥰 I am 22 and living a normal and full life, my parents tried to keep things as normal for us as possible and im so grateful for that

  • @HelenAngelo-pc7nw
    @HelenAngelo-pc7nw Před měsícem

    Best regards to you drosuma I'm permanently cured from pulmonary fibrosis all thanks to your herbs ..

  • @Izaachou
    @Izaachou Před 2 měsíci

    i really hope there will be more research done on how to improve gut microbiome in CF, i really feel this is the key to loads of issues we face, mental and physical!!

  • @bobrushing1085
    @bobrushing1085 Před 3 měsíci

    To all sufferers of CF , friends and family of sufferers, love you all . I was diagnosed in 1964 and just turned 60 last month.

  • @OracleTheRonin
    @OracleTheRonin Před 3 měsíci

    Sometimes I can’t understand the Geordie “people”

  • @srishtisrishti6281
    @srishtisrishti6281 Před 3 měsíci

    Hiii My name is Ankit kumar I am Indian I am all Cystic fibrosis I live in Delhi I am 32 year old

  • @sonia15702
    @sonia15702 Před 4 měsíci

    God bless you

  • @rammohanrao603
    @rammohanrao603 Před 4 měsíci

    My beautiful son Kalyan 15/03/1997#07/03/2024 at the age of 27 years old died from cystic fibrosis complications of post Lungs transplantation operation at yashoda hospital secunderabad May he rest in peace and Love ❤️🙏 my son Kalyan

  • @rammohanrao603
    @rammohanrao603 Před 4 měsíci

    My only beautiful son Kalyan died cystic fibrosis and after that both Lungs transplantation operation may he rest in peace at age of 27 years old boy

  • @sonia15702
    @sonia15702 Před 4 měsíci

    What a load of BS you have NHS care, you have low to free cost meds. Hospital care costs nothing. Heating soup etc is low cost. Invest in proper blankets etc. Theres NO way our govt , CF centre national govt or state govt let anyone wirh CF or else live in damp or mouldy conditions ! If that was the case we would go to the media and hold relevent authority accountable !!! There is no way our govt with CF would let anyone in Australia live in these conditons ! We would seek the power of our own parliament member in our own town and CF foundation ! Youre literally being ripped off and rail roaded by your own govt ! You pay taxes therefore, they owe YOU quality care of life and housing !! We just wouldnt put up with this as a natuon here ! We also provide our citizens on disability with enough money to eat, subsidy to help pay for power etc. Subsidy for hospital car park and travel, and more. Id be disgusted if i were you for being part of Britain ! We have much more exceptional care here.

  • @paulwarren8832
    @paulwarren8832 Před 4 měsíci

    Amazing video - wonderful to hear these personal accounts. Thanks for sharing.

  • @celycute1
    @celycute1 Před 4 měsíci

    Why is there no surgery? Like CARDIAC BYPASS SURGERY

  • @charmainede-bell8763
    @charmainede-bell8763 Před 4 měsíci

    I just found out that my adult child's CF team has mentioned CF STORM to him. I do hope he gets to take part

  • @charmainede-bell8763
    @charmainede-bell8763 Před 4 měsíci

    Thanks, I'm finding this very interesting as a parent of an adult with CF

  • @VivianUwakwe
    @VivianUwakwe Před 4 měsíci

    This was an amazing video

  • @alaina2501
    @alaina2501 Před 5 měsíci

    I began working in the healthcare field a few months ago and I'm glad I overheard my clinic manager mention CF. Thank you Emma Lake for sharing your feelings about CF and spreading awareness! I hear you and I see you. 👏💜🎗

  • @TheRamymohamed
    @TheRamymohamed Před 5 měsíci

    😢 i saw this video 3 years ago now am using this creon like u brother stay strong❤❤

  • @user-xp6fu3qr1i
    @user-xp6fu3qr1i Před 6 měsíci

    I hope to you good health and You should be Muslim

  • @nidgeb2256
    @nidgeb2256 Před 6 měsíci

    "So he flips him over and he ffff....funnily enough it lands on its wheels and drives away"

  • @AWayOfLiving84
    @AWayOfLiving84 Před 6 měsíci

    Does your family care for you? If they do that's a good thing. As long as they don't overcare. I've noticed families with no money problems care more. Is that because I have no money problems?

  • @AWayOfLiving84
    @AWayOfLiving84 Před 6 měsíci

    👣🌍☯️🤷🏻‍♂️ I am healthier than most. But I still get sick a bit. At the moment it's as bad as it's been in a while.🫣 I will have some money to get a nebuliser soon. Saving. Usually I'd go to hospital when I'm this bad but I can't. Believe what you want to believe. Cause that's what people do

  • @user-ps5nf4bl1z
    @user-ps5nf4bl1z Před 6 měsíci

    Melanie chisholm is asome woman l feel exercise again

  • @adedamolaadeleke6228
    @adedamolaadeleke6228 Před 6 měsíci

    Well 19th march another young ade's birthday he's my cousin

  • @adedamolaadeleke6228
    @adedamolaadeleke6228 Před 6 měsíci

    Well done ade.

  • @michaeleinstein7097
    @michaeleinstein7097 Před 6 měsíci

    I'm so grateful for the incredible progress in CF treatment! Kaftrio and Kalydeco has been a miracle for me for the past 3 years, thanks to the dedication of researchers like Dr. Nick Simmonds. While his talk highlighted the challenges faced by those not suitable for Kaftrio, the HIT-CF project offers immense hope for those who haven't found their miracle yet. Thank you, Cystic Fibrosis Trust, for supporting Dr. Simmonds and other researchers in their quest for a cure for everyone! I'm beyond excited to see what the future holds for personalized medicine and can't wait to hear more about the next steps for HIT-CF."

  • @syedpervaiz141
    @syedpervaiz141 Před 7 měsíci

    Believe Almighty Allah I am also cf patient facing problems in daily life but I trust Almighty Allah any desease is not the reason of any death.How many persons they even take a tablet in his life time but suddenly they died Why because death keeps no calendar.May Allah protect us all and give healthy life to all people..Nice video.....

  • @noahriding5780
    @noahriding5780 Před 7 měsíci

    someone experiences coughing fits for a long time after eating... every time they eat is this not just asthma? And with constant lung infections, it seems like that wouldn't just be asthma?

  • @md-ariful-islam329
    @md-ariful-islam329 Před 7 měsíci

    Awesome😍

  • @md-ariful-islam329
    @md-ariful-islam329 Před 7 měsíci

    Wow Great🥰😍

  • @foxy7674.
    @foxy7674. Před 8 měsíci

    love everything about you, your a true gem.

  • @user-ls7vm2vx2w
    @user-ls7vm2vx2w Před 8 měsíci

    My son totally agrees with you.

  • @Pax_Mayn3
    @Pax_Mayn3 Před 8 měsíci

    My friend had this, he didn't make it to high school. His parents smoked in the house he was in a terrible environment for that stuff. The gym teachers used to force him to run, in the Texas sun, after they cut the dry grass and there was particles thick in the air. He didn't get the care needed. I used to get so upset at the teachers but they never listened. I should have went to the cops. His name was Javier. He liked Pokemon. I visited him in the hospital and brought the whole gang. I remember his voice, his laugh, he used to make this really strange honking sound. I wish I remembered more, I wish I had deeper conversations with him, he was always so upbeat.

  • @sonia15702
    @sonia15702 Před 8 měsíci

    Thanks for adding this ! I lost several friends of CF in Australia in the 1990s from it all before 18. I miss them so much. This is dedicated to ; Dimity Siimonds, Aija Rahnel, Michelle Dyer, Jenny Glenn. I loved you all xx Sonia

  • @Jojo-CyFi
    @Jojo-CyFi Před 9 měsíci

    Your experience is articulated very well, thanks for that.

  • @Jojo-CyFi
    @Jojo-CyFi Před 9 měsíci

    Thank you for that information.

  • @NojusEmperor
    @NojusEmperor Před 9 měsíci

    Adorable young man, wishing him the best with a healthy long life.

  • @JiMxtreme
    @JiMxtreme Před 9 měsíci

    And then he spies this cookbook right and he says “that’d be nae good to me that, would it”

  • @paulwarren8832
    @paulwarren8832 Před 9 měsíci

    Amazing story, well done mother and toddler for pushing through, I can’t imagine how hard it must have been. Hope things have improved for you both now. Wish you both all the best.

  • @TheOne-xu5oy
    @TheOne-xu5oy Před 10 měsíci

    I have CF and I can confirm through personal experience that there are a whole host of CF symptoms that were alleviated once a focused on my gut flora. I was already taking Trikafta and focusing on the things my doctor told me which made a huge difference. That difference was further improved when I began paying closer attention to my gut flora. Hope this helps other fellow patients.