Pulmonary Fibrosis

Diagnosed with IPF in 2007 - scary! Re-diag NSIP 3 months later - not so scary! Defying the odds. Retired FE Lecturer. O2 24/7. Listed for transplant 12/08/19!

[Fly🪶 @flockofwords]

@georgermburn @MichaelRosenYes The most frustrating thing is that we HAD a good pandemic action plan ready.

We just didn’t follow it.

Singapore’s pandemic plan was basically copied from ours, AND THEY IMPLEMENTED IT.

They’ve had 5 deaths per million people; we’ve had 685 deaths per million people.

[Steve Jones @ActionPFsteve]

PULMONARY FIBROSIS INNOVATION CHALLENGE. @ThreeLakes_TLF want your ideas and solutions on raising PF awareness, speeding up diagnosis and improving care. Over $100K in grants. Info Session 18 Aug. Deadline 11 Sep.
https://t.co/B9cANLiCkX @ActionPFcharity @EU_IPFF #CurePF

[Pulmonary Fibrosis @MyNSIP]

@JDwooooo

[Boehringer Ingelheim @Boehringer]

#DYK that #dogs sometimes perceive hugging as constricting🤯🐶? Instead of a big hug, they often prefer being petted in their favorite spot. Learn more here: 👉 https://t.co/emTtb5Sst7 #DogsOfTwitter

[Pulmonary Fibrosis @MyNSIP]

@glaspoletweet @TobyMMaher This would be amazing. It took more than two years of investigations to get my first and incorrect diagnosis of IPF at a local hospital. Sorted by @TobyMMaher and @RBandH of course.

[Jeremy Vine | Here, on Tiktok, Insta & Facebook @theJeremyVine]

Great lunch with my mum but apparently in Sutton you aren't allowed to go at 14mph

[Taskforce For Lung Health @lungtaskforce]

People with lung conditions need the option of access to digital #PulmonaryRehab services while face to face sessions are paused. We can learn from this how best support to people with respiratory conditions in the future.

[British Lung Foundation @lunguk]

It's important to have a healthy, balanced diet if you have a lung condition. Eating well can help you manage your symptoms and healthy foods and fluids contain essential nutrients to help keep your lungs healthy.

Find out more in our handy guide.

https://t.co/sTEuIRkdv3

[Taskforce For Lung Health @lungtaskforce]

Rita is 91 years old and lives in a care home with her husband Eric, who is 100. Rita has Idiopathic Pulmonary Fibrosis (IPF), and shares her story of how exercise is key to living well with a lung condition. Read more: https://t.co/5jgSmPIGax

[Pulmonary Fibrosis @MyNSIP]

Here @MFTnhs being cared for by the amazing @NorthWestILDIPF as O2 needs are silly. Still hoping for the best! #pfproblems

[Steve Jones @ActionPFsteve]

Great meeting of the Pulmonary Fibrosis Transplant Patients Support Group (PF-Tx) today with excellent talk by Dr Jas Parmar of @RoyalPapworth. Next meeting late July. Info: [email protected]. @ActionPFcharity @lungtaskforce #CurePF

[Action for Pulmonary Fibrosis @ActionPFcharity]

Changes to shielding are coming into place today.

The advice to shield will be ‘paused’.

This means if you have pulmonary fibrosis you’ll be advised to follow strict social distancing.

Have a look at our website for advice and guidance

https://t.co/k9MUDhScsv

[ILD IPF Doc: Nazia Chaudhuri @ILDIPFDoc_NI]

@TamesideGroup @BoltonFibrosis @ipf_manchester As the number of cases increase in GM and North and government pauses shielding, please stay safe and if at all possible stay at home...Blackburn and darwen are not pausing shielding

[Pulmonary Fibrosis @MyNSIP]

@ActionPFsteve @ActionPFcharity @NICEComms Is shame the right word?

[Pulmonary Fibrosis @MyNSIP]

@KarenMarshall02 Happy to help with your questionnaire and can pass on to others not on Twitter if you would like?

[Joe Bowman @joe__bowman]

I lost my father last week to Familial Pulmonary Fibrosis after having lost his two brothers in the last four years with the same. In his memory, we are raising money for @ActionPFcharity to further research into Pulmonary Fibrosis: https://t.co/7sYPAzBvU3

[Steve Jones @ActionPFsteve]

Great interview @IPFdoc on @Channel4News. Glad you compared COVID-19 related progressive PF to living with Idiopathic Pulmonary Fibrosis. IPF patients know all too well what it feels like! .@ActionPFcharity @EU_IPFF #CurePF

[Action for Pulmonary Fibrosis @ActionPFcharity]

Are you passionate about making research accessible to patients? Do you want an instrumental role in driving forward APF’s role into research? APF is recruiting its first Research Officer – deadline for applications 17th August. https://t.co/1Ih41RYvEb

#CurePF #CureILD #IPF

[Idiopathic pulmonary fibrosis @IpfRm]

"The first drug is never perfect, the next one is better, the next one is better. We now have multiple clinical trials..now there are multiple companies doing drug studies so I think there is a lot of hope. "
@KaminskiMed
#IPFRaremark #IPF
https://t.co/imRRyv9lk8

[Taskforce For Lung Health @lungtaskforce]

Rita is 91 years old and lives in a care home with her husband Eric, who is 100. Rita has Idiopathic Pulmonary Fibrosis (IPF), and shares her story of how exercise and #PulmonaryRehabilitation is key to living well with a lung condition. Read it here: https://t.co/5jgSmQ0hz7

[ILD IPF Doc: Nazia Chaudhuri @ILDIPFDoc_NI]

This should inform shielding advice for our patients. Stay home stay safe @TamesideGroup @BoltonFibrosis @ipf_manchester