Fought so hard to get access to CF modulators. In the past two years possibly 1 course of antibiotics in total. Prior to these drugs probably 10-12 courses per year. Amazing medications #cysticfibrosis #kaftrio #trikafta #kalydeco
#CF #cysticfibrosis community - anyone got a good list/info graphic of which foods have 10g of fat in to take #symkevi #kalydeco with? Daughter eats so little (aged 8) & not gained any weight in one year. Trying to feed her v difficult, even with supplement drinks #cfaware
A day to be truly grateful #Symkevi #Kalydeco #cysticfibrosis #NHS #PrecisionMedicines for my 8yr old. One of a v small number of patients approved for this medication recently just licensed down to age 6. Thanks to all who campaigned for Orkambi as because of that she got this
5 weeks until my daughter starts #symkevi & #kalydeco from @VertexPharma #precisionmedicines #cysticfibrosis
Life changing year for her, despite not having a hospital for 1 year. What with Bluetooth spirometry, home phlebotomy visit her CF care is improving fast.
‘New drug offers hope for thousands with cystic fibrosis’
Kaftrio FDA application for those aged 6+ around the corner. UK/EU next @VertexPharma?
We are immensely grateful that my daughter started #Kalydeco as a result of the Trikafta approval ...
It’s here! Never though we’d see the day.
#Kalydeco day #cysticfibrosis
My daughter starts it today!
#DumSpiroSpero
Two steps closer to #ivacaftor #kalydeco - letter confirming eligibility and prerequisite eye test done ✅ (kind optician squeezed her in at last minute @VisionExpress thank you)
#cysticfibrosis
So sometimes you are given news the magnitude of which is hard to process.
News we have waited many years to receive. She is eligible for one of these miracle drugs #ivacaftor #kalydeco. We cried tears of hope. She is being given more tomorrows.
Thank you #NHS you are amazing
I saw #Kalydeco opening the channels of a defective CFTR protein. It was astounding. Tonight he said when your daughter is bigger, bring her to the lab & I'll show her what we are doing. She would love that. Anyhow, long thread just to say what a journey #CF is...
Help me & @cftrust fight for access to #Orkambi & #Kalydeco . Sign the petition today! http://bit.ly/Orkambi
