Hi all, just to tell you went to the above event on Monday. Although I live in South Wales have family up that way so was able to travel up Sunday and stay with them. The event was very informative, obviously lots you know and some things are explained more clearly. As you may remember I am the career my husband is the patient but as he wasn't really up for the trip I went on my own.
One thing I felt is there were people who had the disease for a good many years or at least quite a bit longer than the scary 3-5 year stats we have all read about.
I was interested in the Pulmonary Rehab segment which was taken by physio who was the expert in relation to ild and exercise etc. So far my husband hasn't been offered that, in fact it hasn't really been mentioned so I am going to look into that.
There was a segment on the drugs Pirfenidone and nintedinab which was informative as my husband may be going on the Pirfenidone which was what my initial post was about.
Anyway it was an interesting half day and if you are close enough to a event worth a trip, go with your questions.
Lastly the BLF are trying to raise awareness of IPF and will happily send you a template of a letter to send to your MP, so I think that is one way we can help, so Kirsty Williams our AM in Wales will soon be receiving a letter from me.
Take care and keep well.