cf/Aware

@CFAware

All about Cystic Fibrosis. Always refer to your team for specialist advice. Oh and we don't always agree with RTs.

Vrijeme pridruživanja: veljača 2012.

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  1. Prikvačeni tweet
    31. sij

    Kalydeco = ivacaftor Orkambi = lumacaftor + ivacaftor Symkevi = tezacaftor + ivacaftor Trikafta = elexacaftor+tezacaftor+ ivacaftor

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  2. proslijedio/la je Tweet

    If anyone has any help or advice to combat medicine induced headaches and neck pain, I’d be so grateful! Not sure if it’s Symkevi or IV side effects but I’m in a lot of pain 😭 Painkillers and migraleve head patches aren’t touching it

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  3. prije 4 sata

    Clinical characteristics and genetic analysis of cystic fibrosis transmembrane conductance reseptor- related disease.

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  4. prije 4 sata

    Tributes paid to brave Johnstone schoolboy Ayden Cochrane as he makes ‘final journey’

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  5. proslijedio/la je Tweet
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  6. proslijedio/la je Tweet
    prije 15 sati

    Been waiting over a week for a bed in hospital.. still no luck so have to go and sit in A&E tomorrow😩 wish me luck, last time I waited 12 hours🤦🏼‍♀️

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  7. proslijedio/la je Tweet
    prije 17 sati
    Odgovor korisnicima

    I’m honestly sad that eating disorders, disordered eating and unhealthy relationships with food isn’t something that is spoken about in CF more

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  8. proslijedio/la je Tweet
    prije 19 sati

    Any cystic fibrosis/transplant pals have any luck with long term travel insurance? I’m looking for long-term insurance that covers trips over 90 days that isn’t stupidly expensive? Thanks!

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  9. proslijedio/la je Tweet

    has anyone ever been told / diagnosed with ‘disorderly eating?’ ... so not an eating disorder but have a bad relationship with food and eating ?

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  10. proslijedio/la je Tweet
    4. velj

    Let’s see if he can deliver on his promise. I hope so for the sake of this young girl as you can’t play roulette with peoples lives.

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  11. proslijedio/la je Tweet

    I notoriously HATE doing lung function tests & have developed a fear of them. I know that there are reasons why this one had dropped but I still stupidly hoped I’d surprise myself and blow something better. Time to go and die in a hole. – mjesto: Frimley Park Hospital

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  12. proslijedio/la je Tweet
    prije 23 sata
    Odgovor korisnicima

    I mean, if you don't have a coughing attack, nearly pass out, and pee yourself, are you really doing the PFT right?

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  13. proslijedio/la je Tweet
    3. velj

    Really interesting and productive NICE scoping meeting today on trikafta. Great attendance from CF medical and patient community, inc , and a well run meeting that allowed different views to be aired and incorporated.

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  14. 3. velj

    RT CFer’s! I’m fairly new to taking creon, how do you know if you’ve taken enough / taken too much? Which side effect goes with which?

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  15. proslijedio/la je Tweet
    3. velj

    Sending my book to celebs and news outlets interested in CF. Harder to track people down than I realised!

    , , i još njih 4
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  16. 3. velj
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  17. proslijedio/la je Tweet
    2. velj
    Odgovor korisniku/ci

    *PLEASE SHARE* for I only have a lungfunction of 16%!😭 My only hope is I'm begging please SAVE my life! I just want to be able to see my 3 children grow up 😭 PLEASE 😭

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  18. 2. velj

    RT Anyone know who we contact within to get a sharp box collected and a new one dropped off?

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  19. proslijedio/la je Tweet

    Are you caring for a child living with ? Our tips for making sure they are getting the nutrients they need at all ages.

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  20. proslijedio/la je Tweet
    2. velj

    Is it true that we’re not allowed to take Ibuprofen? I’ve always taken paracetamol for aches and pains anyway but why can’t we take Ibuprofen? (According to my mother CFer’s aren’t allowed to take it 🤷🏻‍♀️)

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  21. proslijedio/la je Tweet
    2. velj

    Is anyone really struggling with sleeping on ? I’ve been on it for 7 months and its gotten worse...

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