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jillian mc nulty Jul 12
Look at me TikToking without oxygen & not ready to collapse! A week ago I could barely walk a few steps without being exhausted on 3 litres of I can’t dance but I don’t care 🤣
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Tasha Nelson Jul 11
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Awa’ fishin’ Jul 12
Featuring ma wee famille...
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Jacob Bradbury 7m
Replying to @JacobDBradbury
, in particular, relies on effective antibiotics for successful treatment. While modulators may reduce this need in the long term, last resort antibiotics that work are crucial to keeping life expectancy high.
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Brandon Long 7m
My nebulizer broke and I’ve called every drug store within a two hour drive of my home, including hospitals, and no one has any. And the soonest anyone can get me one, including the pharmacies that ship me my meds, is Friday. Totally not having a panic attack.
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jillian mc nulty Jul 9
My first dose of the life changing drug I was so excited taking it I made myself breathless 😂
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Lorraine Barnes Jul 9
2 years ago we were told he was going to die ... this month was his deadline ... he's still here and he's doing really well ... he's living a "normal" life and I couldn't be happier.
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Cystic Fibrosis Trust Jul 7
We have started an Instagram of and for young people with . We want to make sure young people with CF are heard, check it out here:
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jillian mc nulty 2h
update Day 5. This drug is truly a miracle please wake up & give patients access. My life has already transformed in just 5 days
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Cystic Fibrosis Trust Jul 5
We are incredibly proud to have worked alongside the community in the long campaign for life-saving medicines. The four-year battle to secure access to Orkambi was a critical step and remains the only medicine suitable for many children. (1/2)
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Cat Williams 2h
I was told repeatedly to “join a church” for when I need at-home nursing care I can’t afford before I qualify for hospice. What church is going to give me 9 Nebulizers a day not to mention IV’s every 6 hours?+ pills every 12 hours & O2 maintenance?🤷🏻‍♀️
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AMS-Composites 6h
New mindfulness support for families living with
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Rose Marie Armour 15h
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D.Daniels Jul 11
Will always miss my brother in-law. You were an awesome brother, husband and father who’s life was cut short way to soon. Fuck Cystic Fibrosis. Love you always bro.
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Cystic Fibrosis Trust Jul 8
We know that around the uncertainties of daily life right now are high. Dr Anna McCulloch, a clinical psychologist, shared with us some helpful tips on how to deal with uncertainty and some helpful coping strategies.
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Chloe martens 14h
A beautiful example of how an IDP region in a membrane protein plays a role in function and dysfunction
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Tori Morrish 4h
Another hospital visit done.. Was there about 3 and half hours today! I'm sooo tired, sitting in a room not doing much always takes it out of me!! 🤣 So just ordered a kebab for tea..
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Richard Butler 14h
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Trikafta for Kiwis 24h
Stories like these are the reason we fight! These newest medications are just out of reach of people with Cystic Fibrosis in New Zealand, why are we missing out on these life changing moments?
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Marion Super Jul 10
All the time!! ...and I’m not the one with . I’ve always talked about the ‘ripple’ effect that these cause. The lifting of the anxiety of not only the patient but the whole extended family. 👇👇👇
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