Pat

oh my goodness! this is me. A friend of 50 years, a nurse to boot, said when i told her my diagnosis ‘i’ll always love you and will never forget you’ and i’ve never heard from her since! I’ve lost track of the number of people who have said ‘hope you’re better soon’. Maybe the worst though was a friend who asked me ‘how long have you got left?’. O…[Read more]

yes, ‘get well soon’ even after i’ve told people that won’t happen is really platitudinous

only true in usa unfortunately

yes antifibrotics can be used if the sarcoidosis pulmonary fibrosis is deemed to be progressive. I was recently diagnosed with sarcoidosis fibrosis having been told for years it was asthma. I wish i had pushed for more testing earlier because pulmonary sarcoidosis can be put in remission with treatment, but once it progresses to fibrosis it can’t.

‘international breathe easy ‘ facebook group are running harmonica classas online

There are over 200 forms of ILD, IPF is the most progressive, but there are a  number of auto immune /auto inflammatory diseases which cause PF too. I have Sarcoidosis Fibrosis, its the second  most common form of PF. We have to try to reduce inflammation to slow progress. RA, asbestosis , birds, acid reflux, lots of other cause of PF. Its p…[Read more]

As a librarian i was keen to inform myself about research when i was first diagnosed. I have a list of various studies that started into fibrosis, i was hopeful, but over time i’ve become aware that very few progress beyond first studies. The world collaborative working on Covid showed what is possible when global efforts are put into research, s…[Read more]

It can help if you have other associated issues eg emphysema