How We Can Work Together to Raise Awareness of PF

If you’re a member of the PF community, you’re well aware of how little the general public knows about the disease. It’s important that we all work together to raise awareness. Awareness results in more fundraising efforts, which means more dollars, which means more research, and eventually, hopefully, that means finding a cure.

If you’re struggling with what you can to help raise awareness, we’ve put together some great ideas to get you started.

Get social

Social media is one of the best tools we have to spread awareness for any number of issues that we feel strongly about. To spread awareness for PF, this video is a great place to start, but you can also follow our Pulmonary Fibrosis News page on Facebook, Twitter and Pinterest for other ideas.

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3 comments

  1. Brian Sowter says:

    I have been diagnosed with IPF for almost 1 year but I had shadows on my lungs 3 years ago. I happen to have big lungs and my FVC is 105% so I am years away from getting treatment under the UK (so called) National Health Service. UK is the only country in Europe which does not give Ofev to people till they reach 80%. My Gas transfer is not good and is going down so I will probably never qualify for treatment. I would probably be closer to getting treatment if I had been a smoker. Why cant we pay more taxes and treat IPF properly when it is diagnosed early?
    Actually I am getting Ofev as part of a trial run by Boehringer but I had to organise this myself. And hopefully there will be alternative treatments in future.

    • Linda says:

      Hi Brian,

      I’ve read your post with a lot of interest,and would appreciate some input on my situation. I was diagnosed with IPF in September 2015,I to have never smoked. Since being diagnosed through a CT scan and lung function tests ( fvc at the time was 92%) I have had LFT`s every 6 months each time showing deterioration. In November my fvc was 74% and I had the test repeated last week and I don’t see my consultant until July so don’t know if there is further deterioration.
      My problem is I have been offered no medication just that my consultant is monitoring my illness. I have tried to talk to him but his communication with me is very poor and usually consists of him saying he doesn’t want me to be alarmed! The nearest he’s come to talking meds is to say there’s a trial starting late summer but I may not fit the criteria. I have tried to do research and found plenty of people on medication that could help slow down the progression of this disease and I am completely in the dark about why I have not been offered anything, my gp,s are equally either uncommunicative or don’t understand IPF. During several chest infections I’ve even been told steroids are a waste of time and won’t help but,hear of lot’s of people on them.
      I am not sure if this is down to my consultant or maybe it’s where I live and the funding isn’t available. I am in Leicestershire and my treatment(if you can call it that) is through the Loughborough and Leicester hospital’s.
      I know I’ve rambled but I just don’t understand what’s happening with my care and just wish I had some support from a medical professional.
      If you can help me understand,wonderful if not then I haven’t lost anything, I just want to get some questions ready for my July appointment.
      Thank you for reading Brian, kind regards Linda.

  2. Brian Sowter says:

    Hi Linda
    An NHS consultant told me about 30 years ago and it is even more true today, that you can get really good treatment on the NHS if you fight for it. You need to be well informed and assertive. I find being charming helps too!
    If you have IPF (and this can only be diagnosed with a Hi Res CT scan) then you are certainly entitled to treatment with Nintedanib (usually less side effects) or Perfenidone provided your FVC is less than 80%. These drugs can only be provided by a specialist centre. I believe Leicester is one. Here is the list: https://www.blf.org.uk/sites/default/files/pulmonary-fibrosis-services-list–9-9-15.pdf
    I suggest you contact the British Lung Foundation help line. They were very helpful to me.
    The other thing I did was to see a consultant privately. It was the best £200 I ever spent and all subsequent treatment has been on the NHS or on the trial. Also look for a support group. You will meet others with the same problems and in ours you can chat over a cup of tea with the top consultants. again BLF can help you find a group. Don’t give up there is a lot you can do! All the best Linda..keep in touch.

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