The BLF chief executive Dr Penny Woods has published an article on idiopathic pulmonary fibrosis (IPF), in the Huffington Post today. The article aims to raise awareness and support for this devastating disease that affects so many, yet so little is known about. It also calls for more research and the provision of adequate information and care for patients and their families.
Read it and share with your friends so that more people can find out about this disease and the impact that is has on patients and their family and carers.
An excellent article Dr. Penny Woods. Good to see BLF are fighting the corner of lesser known lung conditions, for recognition, funding and equality of treatment and care. After all if you don't I'm not sure who if anyone will.
A very good article but once again there seems to be the voice of doom about it. I was diagnosed 6 years ago and was on the transplant list for nearly 3 years without a call. I was then told that I was no longer a viable risk.
I am now in what my consultant calls the later stages of the condition and advices me to put my affairs in order. I have arranged with my community matron the level of care I will accept at the end. It all seems doom laden to me.
The thing is although I now need 4 lp oxygen 24/7 I am still able to get around, albeit slowly and weather permitting. My wife. who has been quite incredible through the whole time, says that it's the power of positive thought as we both think that if you dwell on your condition it will only get worse but if you push yourself close to your limit it helps. I know getting close to your limit can be very uncomfortable and quite scary but it doesn't hurt you you may feel a bit ropey for a few hours but the pleasure of doing something that you thought you weren't able to do far outweighs this.
What I'm trying to say is although IPF is a death sentence it shouldn't rule the way you live. Off course there limitations put upon you but there is usually ways to circumvent most of them. ie: mobility scooters, liquid oxygen cylinders, stair lifts are but a few. Unfortunately we have to pay for all but the oxygen some help there would make a world of difference to a lot of people.
When you are younger you are maybe given the chance for new lungs. My husband is 73 and has no chance at all. I have to watch him getting more and more breathless. It is a cruel disease and I suffer along side with him. Roll on when or hopefully if! they find a cure.
Well it took some research but Is diffuse peribronchial fibrosis same as ipf
Like really but yes only difrance in bronchitiasis and asbestosis is what your choughing up .. Am quite disgusted how information is so convoluted but i would agree with my lung specialist when he said its all the same really.
Know wonder my xray as been lost IIDB ATOS have a lot to answer for
Wish we could make the whole world wake up to the fact that people have this disease and their outcome. If it were The Big Word Cancer everyone would be jumping hoops to find a cure. Because the number of people up until now of people with Idiopathic Pulmonary Fibrosis is low it is a virtually unknown disease and there is no cure. If the numbers are increasing like we are being told. Eventually there will be a rush to find a cure. But! That will not help the sufferers of today. They will be all gone. Leaving a lot of grieving people.
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