Welcome to pulmonaryfibrosis.in. If you are here then it may be because you or someone you care about has been diagnosed with some form of Pulmonary Fibrosis. First of all, I am truly sorry that you are here but hopefully this site will be a source of strength for you.
The reason this website exists is because my father passed away due to IPF (Idiopathic Pulmonary Fibrosis) on 5th March 2013. His journey with IPF was long and hard but most of all it was lonely, he had his family close to him, but unfortunately most other people do not understand the nature of this disease. There is very little awareness about IPF in India, even doctors sometimes ask strange questions!
The first time I heard about this disease was back in 2006 when my dad called me to the dining table, sat me down, and said "I have been diagnosed with this disease, it's called IPF". My father was a pilot in the Indian Air Force, due to this he had routine medical checkups. It was in one such checkup that his disease was detected.He had noticed some shortness of breath while climbing the stairs but nothing more than that.
When I heard of this, the first thing I did was google it. I was dumbfounded. There's no cure ? Average survival of 2-5 years ? The only option was a lung transplant which was not available in India at the time. I was 20 years old and unprepared to face such a reality, but reality was there and it was unavoidable.
Luckily my father lived well for the next five years with serious symptoms only showing up in the sixth year (end of 2012 - early 2013). In all of this time, none of our friends had ever heard of this disease or knew what it was about. There is so little awareness about IPF in India, yet, visits to the doctors office always proved that a large number of people suffer from this condition.
I'm hoping that through this website, we in India can find ways to battle this disease. IPF is a horrible disease and those who are affected must stand together. Together we can find ways to ease the burden, manage the symptoms, and support each other. I hope to start a forum here where we can share information about the latest medication, progress with lung transplants, ways to manage decreased lung function, and more.
This site is not just about IPF but all kinds of pulmonary fibrosis. Often, the methods of management are similar (oxygen machines, antioxidants, yoga, etc.) and therefore applicable to both groups of people with PF.
I shall begin by writing about our journey with IPF and how we managed as best as we could. At times I will share information about the various options we explored, the doctors we met, the medicines we tried, and more. Through this, I hope to give strength to people struggling with this condition and their loved ones. I hope that we will be able to build a community over here so that we can support each other in our unique and tragic circumstance. You are not alone, and together we shall be stronger.