AnnaOr @AnnaOr15
23 Midlander Joined August 2020-
Tweets478
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Can any people in the CF community who have had bloodclots as a result of midlines please share reassuring stories where everything gets better & is completely fine - am feeling very scared right now 😣 @CFAware @cftrust
When I'm feeling particularly down, I try to take my mind back to March last year when I first got my Kaftrio, how it felt when i got the call, and finally being able to take it. It was the most magical time of my life and its helpful to bring myself back to it!
Please take a second to sign this/ pass it along to others, and check your emails to confirm you've signed it ! petition.parliament.uk/petitions/5952…
Please take a second to sign this/ pass it along to others, and check your emails to confirm you've signed it ! petition.parliament.uk/petitions/5952…
AMAZING!! so so happy
It’s so upsetting for young families still waiting for a simple licence extension to #Kaftrio. Lots of our under 12’s are very poorly & will be in hospital for Xmas,these admissions cld hv been avoided! Come on @MHRAgovuk it’s just a rubber stamp we want for Xmas #CysticFibrosis
Come on @MHRAgovuk please give us the Christmas present our little ones with #cysticfibrosis need so desperately
Come on @MHRAgovuk please give us the Christmas present our little ones with #cysticfibrosis need so desperately
I know you are concentrating on #Covid @MHRAgovuk but pls don’t let it delay granting access to #Kaftrio for 6-11 yr olds with #CF it will protect them from hospital admissions & Covid. Too many r sick & will be hospitalised over Xmas. Adults lives hv changed hugely by access.
Please, please, please listen to us @MHRAgovuk. You have no idea how stressful this situation is. My 7 year old is missing out on so much whilst she sits in hospital waiting for #kaftrio. Give her (and us) a chance to live a #lifeunlimited by CF.
Please, please, please listen to us @MHRAgovuk. You have no idea how stressful this situation is. My 7 year old is missing out on so much whilst she sits in hospital waiting for #kaftrio. Give her (and us) a chance to live a #lifeunlimited by CF.
Can you help with this please. Our #cysticfibrosis kids need #kaftrio ASAP with so many kids catching #COVID19 / #OmicronVirus in schools its really urgent now Please help @MHRAgovuk @cftrust @DavidRamCFT @strawfie @ChrisMRiches @Daily_Express
When will the @MHRAgovuk approve this wonderdrug for kids in the UK I thought #brexit meant we’d be able to be more flexible & get things approved quicker than the @EMA_News 🤷♀️ Our kids need #kaftrio too 🙏🏻 Please hurry up as with #omincron our #cysticfibrosis kids need it now😢
When will the @MHRAgovuk approve this wonderdrug for kids in the UK I thought #brexit meant we’d be able to be more flexible & get things approved quicker than the @EMA_News 🤷♀️ Our kids need #kaftrio too 🙏🏻 Please hurry up as with #omincron our #cysticfibrosis kids need it now😢
.@MHRAgovuk thousands of parents are waiting for you to simply rubber stamp life saving #kaftrio as their under12s with #cysticfibrosis face another perilous winter of #flu and #COVID19 threatening to damage their lung function yet again. They can’t afford to wait. @cftrust
.@MHRAgovuk thousands of parents are waiting for you to simply rubber stamp life saving #kaftrio as their under12s with #cysticfibrosis face another perilous winter of #flu and #COVID19 threatening to damage their lung function yet again. They can’t afford to wait. @cftrust
1,000’s of children are asking for 1 thing for a Xmas. The gift of a life unlimited by #CF @MHRAgovuk pls stop dragging yr heels you were supposed to make things quicker! @EMA_News hv approved #Kaftrio u just need to rubber stamp now.
Does anyone know when people with CF will receive the booster vaccine?
May is #CF awareness month!Pre #kaftrio,i’d spend hrs a week riding my bike whether I wanted 2 or not in order 2 clear my chest! Now,there is no longer the necessity,I do it 4 fun thanks 2 this drug #trikafta #CFAWarenessMonth #globalcfddrugs4all #globalcffamily #trikafta4all
To ensure that everyone who would benefit has access to Kaftrio, the UK’s MHRA needs to endorse this decision. We expect this to be rapid and urge them to do so without delay. (2/2)
come on @MHRAgovuk @MattHancock Kaftrio is approved for all eligible in the EU now. This should come into full effect in the UK immediately, please don't make us leaving the EU cause another delay in accessing life-saving medication for people with Cystic Fibrosis!
come on @MHRAgovuk @MattHancock Kaftrio is approved for all eligible in the EU now. This should come into full effect in the UK immediately, please don't make us leaving the EU cause another delay in accessing life-saving medication for people with Cystic Fibrosis!
SO BLOODY HAPPY TO SEE THIS!!! FINALLY!!! feel very lucky to have been able to start Kaftrio in March but so thankful that it's finally in writing for everyone.
SO BLOODY HAPPY TO SEE THIS!!! FINALLY!!! feel very lucky to have been able to start Kaftrio in March but so thankful that it's finally in writing for everyone.
Kipluck O'the Irish �.. @kipluck
1K Followers 4K Following My babies (@critters2go) have 4-12 legs. My life's critters, pills, & chaos! I'm a #Christian #Spoonie #Mormon #Steampunk #Whovian #Nerdfighter #PartTimeMermaid
Leelis @Leelis1273685
168 Followers 4K Following
Seedeph @seedeph43966
190 Followers 6K Following
Sathes @Sathes971128
196 Followers 4K Following
JODIE MORGAN @CFCHAMP12
34 Followers 119 Following You never know how strong you are , until being strong is the only choice you have 💫
Ennelym @Ennelym1
14 Followers 725 Following
Magic Bullet @KirstyMagic
69 Followers 173 Following
Lucy Taylor @LucyMaryTaylor
3K Followers 1K Following Cat momma, Creon taker & green tea advocate ☕️ | Lifestyle Blogger 👩🏻💻 For blogging enquiries 💌 - [email protected] Instagram - @lucymarytaylor
Moni @Moni92171190
99 Followers 118 Following CFer . Keep exercising!! It’s good for us ! Books Science & Technology Football Travel Travel HaHa History Music Movies General News
Rosie Short @RosemarieShor14
197 Followers 2K Following
Shirley Lawlor @jslaw_lawlor
127 Followers 898 Following Embrace life. Why can't we all share this planet in harmony. I dream of the day where there'll be no more injustice to fellow human or animal. #justbe
Hassan Khader Ali You.. @hassankhaderali
1K Followers 1K Following SOS: Hassan Khader Ali,from Yemen.Suffering from muscle dystrophy,I appreciate your help in my long struggle to keep going. #chronicillness #MuscularDystrophy
Peterh @peterjh2019
236 Followers 2K Following
cystic_fibrosis_champ @laytoncf12
65 Followers 312 Following Cystic Fibrosis Warrior & Paediatric Stroke Survivor 💪🏻 LETS RAISE AWARENESS TOGETHER 💜💛
Hobbes278 @Hobbes2781
21 Followers 43 Following
🐝Danielle🐝 @Larkin1033
2K Followers 3K Following I have a dream!!! To find a cure for Cystic Fibrosis!!! My daughter has double DF508 mutation. https://t.co/95sHiKewS6 Snap Dannilarkin IG Dani3ll384
lauren @lauren_ritchiee
60 Followers 228 Following
Nicola Wilson-Torch @NicolaTorch
1K Followers 2K Following @sgsah AHRC PhD student @stirpublishing looking at social media and the publishing ecosystem 🔍 / Cystic Fibrosis 🫁 / Northerner in Scotland 🏴
Cathy @CatherineAskin3
10 Followers 85 Following
Fight4Orkambi @fight4orkambi
1K Followers 654 Following #mumonamission Gemma Daysh, Campaigner for access to medicines, In the fight until all with cf have the chance to live a life unlimited 💪💪💜💜
Richard Saunders @richardringwood
85 Followers 264 Following
Gemma @Sophs_mum
1K Followers 1K Following Mum, nurse. TOF/OA & @CFAware Ice Skating/Skaters mum. Lover of astrophotography 🔭
Betsy Morgan @BetsyJones7
192 Followers 653 Following
Paul Dawson @PaulDaw00359350
195 Followers 364 Following
John Schroeder @cffschroeder
2K Followers 2K Following Advocating for CF tomorrows! All tweets are mine. Einstein: Only two things are infinite, the universe and human stupidity, and I'm not sure about the former.
Karen Green 💙 @Kazza_26
319 Followers 899 Following Embarrassing Mum😂 Owned by my Schnauzer Girls😍 Protective Big Sister To A Cystic Fibrosis Warrior! Raising Awareness of Cystic Fibrosis!
Saikiran #TeamVihaan @g_SKiran
342 Followers 528 Following Proud Father of Cystic Fibrosis Warrior. I am an Indian. JAI HIND ✊🏻
Shane Howard Magill @TransManKnits
300 Followers 486 Following If it wasn't for my C.F. team I wouldn't be half the man I am today. I can't thank them enough for all their recent support.
Nicola Johnson @JohnsonMNicola
968 Followers 1K Following Director of People & Culture in a Multi-Academy Trust. School Governor. Mum, Step-mum, and raising awareness of Cystic Fibrosis when possible. #NoOneLeftBehind
Anthony Thompson @bigbaddoctor
2K Followers 5K Following 58, Hubby, Dad, Runner, Gamer,Cystic Fibrosis (pw), 🔺F508 & 2798+ 5G - A, Consultant in Palliative Medicine, Recent #clavicle 🚴 crash, ManU fan, ❤️NHS
BonerGarage @BigJuic04130684
460 Followers 559 Following This troublous wringing of hands, this dark ceiling without a star. #CF #BPD
Jodie 🌻 @JodiieLouiise_x
852 Followers 695 Following 30 years old ♥ #TheScript🍀❤️#Southbank #WWFC 🐺 #cysticfibrosis
Leedsofcourse 🏆 @leedsofcourse
1K Followers 1K Following Love football especially Leeds United. love sarcasm, people in general piss me off, dislike today’s snowflake society.
Liam Mc Hugh @liammchugh1961
1K Followers 2K Following CYSTIC FIBROSIS TRUST AMBASSADOR, BEM 2015, PRIDE OF BRITAIN FINALIST 2016, ULSTER HERALD SPORTS PERSONALITY 2017. PRIDE OF BRITAIN WINNER 2020.
Emma M Smith 💙 @EmmaMSmith2
240 Followers 181 Following Driving instructor (ADI) with Bill Plant Driving School and mum to 2 teenagers, the youngest a cf warrior! Music lover, I love to sing!
Tommy 🐇 @BuiltNinjas
230 Followers 735 Following https://t.co/cVHcKx6ZsQ I came here for @blink155pod DDF508
Strawfie Challenge @strawfie
3K Followers 5K Following A Selfie Campaign - Take a photo breathing through a straw, #strawfiechallenge Download campaign song: Breathe With Me by Betsa in aid of the CF Trust (UK)
CF Adventurers @CfAdventurers
2K Followers 3K Following CF Adventurers, https://t.co/0WCB7sg5Xf, is a place for people with cystic fibrosis to meet online, support each other, chat, and have fun.
my CF Hero 💙 @myCFHero
1K Followers 2K Following Mother to a 9 year old girl, with the life limiting condition #CysticFibrosis. Fighting for access to medicines #Orkambi #Kaftrio (#Trikafta) #DoTheRightThing
Jo Davidson @CFcarer
2K Followers 2K Following Thinking of the thousands who are still waiting for #Kaftrio etc...#NoOneLeftBehind. Tweet abt CF, Strictly & general stuff. Unison✊
Vihaan Krishna @vihaan_cfindia
1K Followers 851 Following Sharing the journey of Vihaan's life with cystic fibrosis,Join us in spreading awareness, celebrating victories, and embracing the beauty in every moment 💜.
McGuinn 🌍 @Mcguinness2A
3K Followers 3K Following
Greg Hunt @TheHonGregHunt
82K Followers 3K Following University of Melbourne Honorary Melbourne Enterprise Professor | Former Member for Flinders 2001 - 2022 | Former Minister for Health & Aged Care
REGINA SORENSEN 👩�.. @BBreggie
5K Followers 2K Following Winner of @bigbrotherau 2022 Winner of BB2003, 2 beautiful kids, I have Retinitis Pigmentosa /Ushers 2 My son has Cystic Fibrosis, Enquries [email protected]
Кosta Kostadinov @BogeyTrain76
563 Followers 1K Following Husband, Daddy of a cf warrior, pronoun free. Golf hack and disgruntled member of CanuckNation, JT non-believer
Matt Jones @MattJonesYYC
3K Followers 288 Following MLA for Calgary-South East and Minister of Jobs, Economy and Trade.
Shirley Lawlor @jslaw_lawlor
127 Followers 898 Following Embrace life. Why can't we all share this planet in harmony. I dream of the day where there'll be no more injustice to fellow human or animal. #justbe
Peter Wark @PeterWark1710
2K Followers 620 Following Conjoint Professor @uni_newcastle @hmriaustralia. Senior staff specialist in Respiratory and Sleep Medicine @HNEHealth. Views are my own.
Chris Greasley @ChrisGreasley
39 Followers 138 Following
Kate Eveling @thevftos
1K Followers 703 Following Video Creator- chaotic, cystic fibrosis, mental health advocate 👩🏼💻 YouTube 🎥- https://t.co/6yUHVl6XEp
Margaret Ellams @EllamsMf
39 Followers 84 Following
Peter Trethewey @PeterTrethewey
168 Followers 245 Following Proud dad. General Manager of @excathedrachoir. (Very) occasional singer. Enjoys a jog.
CF Voices @CfVoices
163 Followers 14 Following Aiming to understand the impact of treatment with CF modulators on patient’s families and carers, to give them a voice within the healthcare system in England.
Sadiq Khan @SadiqKhan
1.1M Followers 11K Following Mayor of London. Promoted by Pearleen Sangha on behalf of London Labour, both at 57-59 Great Suffolk Street, London.
Moni @Moni92171190
99 Followers 118 Following CFer . Keep exercising!! It’s good for us ! Books Science & Technology Football Travel Travel HaHa History Music Movies General News
Ann Sinclair @crazymaizie3
93 Followers 190 Following Proud mum of two wonderful sons, one with Cystic Fibrosis.
Phoenix🔥 @PhoenixPneuma
147 Followers 474 Following I just think existence is pretty neat~ ▪︎29▪︎lesbian▪︎🇨🇦▪︎
Win4Quinn @Win_4_Quinn
41 Followers 110 Following
Maggieg @M44GYG
80 Followers 133 Following lives in a magical world of fairies and unicorns. Cystic fibrosis campaigner and founder member and trustee of Flutterby FUNdraisers for cystic fibrosis.
all theee sun @aalisonn1999
56 Followers 163 Following
Grace Herbert @graceherbert__
539 Followers 731 Following ♥ Wife ✭Focusing on a mindful lifestyle whilst living with Cystic Fibrosis✨
ells ⚡️ @thelifeofells
447 Followers 380 Following
samantha vogel @_socialmedia4U
1K Followers 2K Following We create digital content & provide product photography for South Wales Independent Businesses to use on #Twitter #Facebook #Instagram #Website #Blog #Marketing
Sophie @sophie1_xox
39 Followers 129 Following CF•Uni•🇧🇸•🇬🇧•She/her• https://t.co/kdUbG3MfwH Embroidery Insta: @stitchingbysoph
Stanley's Journey @StanleysJourney
341 Followers 575 Following our little boy Stanley was diagnosed with Cystic Fibrosis at 20 days old. follow our blog https://t.co/RvaGAS8NlV -raising funds for CF trust. 💜💛
Shaun @Speshhhhh
697 Followers 1K Following
FightCysticFibrosis @CFfighters
32 Followers 35 Following dont get on this anymore, follow me at @chelstripp1
Pebble Biotechnology .. @James_Fildes
574 Followers 374 Following Accelerating your innovations into healthcare, without the need for laboratory animals.
sanket @sanket60493433
12 Followers 392 Following
Rhiannah @RhiannahmayC
228 Followers 266 Following 24/3/2020 the day my life started to change for the better (Trikafta-kaftrio 💛 is a miracle.) /28/11/2021 Col ❤️My Forever💍
Andrew Gwynne MP @GwynneMP
53K Followers 861 Following 🌹 Labour MP for Denton & Reddish | Candidate for Gorton & Denton | Shadow Social Care Minister | Husband, Dad, Grandad, owned by a Chihuahua | VIC20 user🕹👾
John McDonnell MP @johnmcdonnellMP
338K Followers 8K Following Labour MP for Hayes and Harlington and former Shadow Chancellor. Join the Labour Party here: https://t.co/vbWxb5FqMM
Lilian Greenwood @LilianGreenwood
32K Followers 5K Following @UKLabour MP for Nottingham South and Shadow Minister for Arts, Heritage and Civil Society, amongst other things. She/her. For casework please email or phone
Nadia Whittome MP @NadiaWhittomeMP
121K Followers 2K Following Labour MP for Nottingham East • Notts born and bred • @CommonsLUHC member • she/her 🏳️🌈🌹🏹
Jo Stevens @JoStevensLabour
36K Followers 3K Following @UKLabour & @WelshLabour MP for Cardiff Central. Mum, sister, daughter. Shadow Secretary of State for Wales. 🏴
Robert Courts MP @robertcourts
21K Followers 4K Following @Conservatives Member of Parliament for Witney & West Oxfordshire | Solicitor General for England and Wales | [email protected]
Jackie @65roses1984
477 Followers 27 Following Hello I'm 38 and fighting cystic fibrosis... I'm living my life and loving it. #cysticfibrosis #love
Jeremy Parks @JWheezy314
461 Followers 8 Following Just a guy with Cystic Fibrosis, married to an amazing woman, trying to spread God's love, inform people about CF, and LIVE LIFE!!!
Kat Hodgson @kakey89
445 Followers 1K Following 31 | I have Cystic Fibrosis | Ambassador for CF Trust | double lung transplant Dec '15 | liver transplant July '08 l love my 2 dogs #SAFC #CF #DONATEMATE
Shelagh Fogarty @ShelaghFogarty
139K Followers 6K Following Presenter @LBC 1-4pm weekdays, writer, event host, podcasts https://t.co/hWZTd7seRE Contact https://t.co/bOQKFBk7Oa
Nicola Wilson-Torch @NicolaTorch
1K Followers 2K Following @sgsah AHRC PhD student @stirpublishing looking at social media and the publishing ecosystem 🔍 / Cystic Fibrosis 🫁 / Northerner in Scotland 🏴
mathu ˚ ༘♡ ⋆�.. @mathumaiii
71 Followers 75 Following
Cystic Fibrosis? I’m pretty happy right now. After using this device AND being on Kaftrio for a few months, I’ve just got my best lung function EVER at the age of 33!!! Full video now up on my YouTube ✌️(link in bio) #cysticfibrosis #lungcapacity #cfwarriors @JoshLJ24
My favourite route done this morning✅ with new fresh and clean @Nike #nikewildhorse trail shoes So lucky to have this terrain & the trails/beach are wonderful Shoes ACE 👍 #seftoncoast #trailrunning #cysticfibrosis #beachrunning #SundayMotivation #kaftrio #NHS #PalliativeCare
Best. Text. EVER!!!!! 🥳🥳🥳🥳 #cysticfibrosis #kaftrio
New route for leg stretcher after work #recoveryrun #cysticfibrosis #kaftrio
When will the @MHRAgovuk approve this wonderdrug for kids in the UK I thought #brexit meant we’d be able to be more flexible & get things approved quicker than the @EMA_News 🤷♀️ Our kids need #kaftrio too 🙏🏻 Please hurry up as with #omincron our #cysticfibrosis kids need it now😢
We’re pleased to share that today the Committee for Medicinal Products for Human Use (CHMP) adopted a positive opinion for the label extension of our fourth #cysticfibrosis medicine. Read more: global.vrtx.com
.@MHRAgovuk thousands of parents are waiting for you to simply rubber stamp life saving #kaftrio as their under12s with #cysticfibrosis face another perilous winter of #flu and #COVID19 threatening to damage their lung function yet again. They can’t afford to wait. @cftrust
Pls don’t delay our under 12’s need #Kaftrio now we know of many young children who are really struggling and #Omicron could be too much for their little bodies to take. @MHRAgovuk this needs chasing.
1,000’s of children are asking for 1 thing for a Xmas. The gift of a life unlimited by #CF @MHRAgovuk pls stop dragging yr heels you were supposed to make things quicker! @EMA_News hv approved #Kaftrio u just need to rubber stamp now.
We did it!!! No more waiting, no more fighting it’s done. Thank you everyone! @LizTwistMP @NSPKU @MetabolicsBCH and @ChrisMRiches
In the place where we met on the very first day of university, I said the easiest yes of my life! 🥰💍♥️
Update on #kaftrio my son, now 16, been on this since Jan and his lung function is now 98%. Two years ago 54%. Truly life changing. Thank you @WelshGovernment for funding you've changed my family's life. @jilli09 @JoshLJ24 @cftrust @benshephard
May is #CF awareness month!Pre #kaftrio,i’d spend hrs a week riding my bike whether I wanted 2 or not in order 2 clear my chest! Now,there is no longer the necessity,I do it 4 fun thanks 2 this drug #trikafta #CFAWarenessMonth #globalcfddrugs4all #globalcffamily #trikafta4all
In #cysticfibrosis years I am an old man! However today, thanks to the miracle of #kaftrio , I blew my best ever FEV1!! @VertexPharma this drug should be made available globally without exception! People before profits! #DoTheRightThing
Please sign the petition to make #Trikafta available to Australians living with #cysticfibrosis PETITION: change.org/p/timefortrika…
"Having seen the clinical trial data, we can only surmise that, once again, money is a stumbling block.” buff.ly/3xiJ78A
#TimeforTrikafta- A call to the to put life changing drug Trikafta on the PBS. - Sign the Petition! chng.it/qnCkFBsG via @ChangeAus
This decision is shocking, short-sighted and heartless. CF families suffer a lifetime of worry and life-saving drugs like #trikafta must be made available at the earliest possible time. #cysticfibrosis #globalcffamily #globalCFdrugs4all #trikafta4all #breathe
Australian PBS has deferred a decision on Trikafta for #cysticfibrosis. Let’s be clear this drug is a life changer. It’s all about the price. @VertexPharma is probably asking >400k AUD per yr per person. This is greed 🤢🤢
Rita is one of my favourite young people, she has cystic fibrosis and there was great hope Trikafta would be added to the PBS - it wasn’t. We are devastated as her health is declining rapidly. I ask you to sign the petition chng.it/cBrYrLxZ7G
Trikafta is a fanatstic medication for people with CF, it signiifcanctly improves lung function, markedly reduces risk of exacerbation and is potentially effective for the majority with #cysticfibrosis
@VertexPharma stunned by your company not coming to an agreement on Trikafta. Australian cf sufferers need this drug immediately. This decision has come down to money and greed. At the expense of lives
Pre #Kaftrio, I use to sleep upright with a minimum of 3 pillows! Today I woke up and all my pillows were scattered and my head was lying on the mattress! No coughing, no struggling for breath, no sputum! I love this drug!
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