So much has happened in 13 years. It’s worth remembering the journey. These CFTR modulators are changing lives. Our daughter is one. Big news at the end of the video.
Posted with her permission. #cysticfibrosisawareness #cysticfibrosis #cfaware #kaftrio #alyftrek
www.instagram.com/reel/DWPP5pm...
Hilariously, this post was removed from Facebook for soliciting drugs 😂
These are the oral medications I take on a twice daily basis to keep me alive.
I have Cystic Fibrosis (CF) and take over 60 tablets per day. The Facebook post was shared with the hashtag #CFLife
#CFAware #CysticFibrosis
#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
Until we have the tablets in our hands I will not believe it. So until then she does not yet know. Methinks she will be very happy!! Thank you @VertexPharma for making these drugs
#cysticfibrosis #cfaware #cfwarriors #PrecisionMedicine #lifeunlimited #moretomorrows
Dear Italian respiratory doctors. I have heard that you have had children with #cysticfibrosis contract #COVID19 & results are anecdotal. Please share anything you have for reassurance/info as the UK community has no idea how it will affect us. Thank you. #cfaware
Would love to hear how other people with #cysticfibrosis or parents of children with the condition are feeling about #COVID19 #coronavirus
Anyone else work in the health profession like me? @CFAware @cftrust @CF_Foundation #cfaware #cysticfibrosis #CF
Minty is overjoyed with her #cfwarrior kit. Thank you so much @CFwarriorsUK @JoshLJ24
Diagnosed with #cysticfibrosis at 3 weeks old with #heelpricktest she’s nearly 7 years old & very fit!
Minty keeps active with #swimming #martialarts #extremehiphop #trampolineworkout #cfaware
I look at my son tonight. He also watches his sister go through the rigmarole of treatments, physio & the disruption of hospital stays. He has also been given a future. We all have #CFAware
@MattHancock @VertexPharma @NHSEngland @cftrust - thank you everyone who campaigned
My daughter looks a picture of health. But she works hard to stay well. Her medication & physio regime are intense. When travelling, an entire bag is dedicated for medical equipment. She tires easily. She gets DLA #notalldisabilitiesarevisible #cysticfibrosis #cfaware
Today will be a nebuliser day! This handy contraption of two devices clicked together for hypertonic saline for peep & vibration. Two further nebuliser sessions interspersed with lots of vigorous physio. Getting an unwell 6 year old to do this takes some negotiation #cfaware
Hearing tests are part of life with #cysticfibrosis due to strong doses of IV aminogylcoside #antibiotics. Annual #audiology test #cfaware. Another #NHS team contributing to care #nhs70… www.instagram.com/p/BkktC_9n9hB/
Raising a Little Lioness mummymedic.wordpress.com/2014/11/09/raising-a-lit... #cfaware #cysticfibrosis
Too much time spent at pharmacy picking up and sorting out #cysticfibrosis medications. Keeping medicines in sync so I’m not here every week. Some meds take ages to arrive and then they are wrong. Surely it could be simpler #cfaware
I'm hiding this debate from my child with #CF as I do not want her hearing the bleak future she has. I want her to have a future for a life unlimited #cfaware - we need these drugs. NICE review for medications for chronic conditions needs urgent updating. She has a lot to offer
Accompanying a school trip to a farm with my child with CF 😱. Hope to have fun while avoiding all the hazards! Hay, mud.... Clinell wipes & spray packed #cfaware
Wow. 2 years ago today. #cfaware ‘Couple share photograph of their desperately ill child in hospital to show just how much we need junior doctors’...
My daughter’s CF team who came to our home for a cough swab yesterday. They support her and our family through sickness & health #LoveYourNHS #cysticfibrosis #cfaware
Amazing. First breath after lung transplant. This is breathing. Dum Spiro Spero #cfaware #organdonation #organdonor #cysticfibrosis https://m.youtube.com/watch?v=cq6wjjN73Q0
Excellent evening at Bristol Children’s Hospital CF parent evening. Inspirational @CiaraHillyer #cfaware @cftrust
Even with great pharmacy services I still seem to spend a lot of my time ordering, tracking and chasing prescriptions #cfaware #CF
Minty made her own @fitbit Charge2 for exercise! When older might be a way of getting good physio & exercise for her CF #cfaware
My 4 yr old has #cysticfibrosis She put 'nasogastric' tubes on her dolls! She loves the @GWS_App w @DrRanj to help normalise things #cfaware
My toddler with CF running a race. She may be last but she's running to live an active life #cfaware https://youtu.be/SuqcjePZKJ4 via @YouTube
Three year old asked to do her own Creon micro. Getting her ready for nursery and take charge more. Mega proud mum #cfaware
You know you're a #CF parent when your 3 year old gets the 'infusion' ready for dolly's PICC line coz their 'chest sounds bad'! #cfaware
Nothing like that feeling of 2 weeks IVs done, PICC line out. Bubbly bath time tonight. Daughter was a total star!! CF get lost #cfaware
Supporting Your Marriage When Your Child Has a Life-Threatening Illness | Arkansas Children's Hospital #cfaware...
Home IVs! Brilliant. No labels making us anaesthetic doctors uncomfortable though. Daughter getting better #cfaware
Never been so pleased to see flashback on the cannula my daughter had tonight. Praise be!! Lost all her IV access, picc line failed #cfaware
We have a bed!! Minty choose this special outfit to come here! She was quite excited but now not so sure #cfaware
