A chest X-Ray from an IPF patient. Wikipedia

What is pulmonary fibrosis?

It kills as many people as breast cancer every year — but you probably haven’t heard of it

It often starts with a cough; perhaps a little shortness of breath. But as the New York Post reported in 2012, it progresses quickly:

So much scar tissue builds up in the lungs of people with pulmonary fibrosis that they can no longer exchange oxygen and carbon dioxide. Within two to five years, patients simply lose the ability to breathe. The only cure currently available to patients is a lung transplant, and even that offers a five-year survival rate of only 40%.

The cause of idiopathic pulmonary fibrosis remains unclear. (Idiopathic is used to describe any medical condition with an unknown cause.) Your lungs progressively scar as you find it harder and harder to breathe. Eventually, although treatments like pirfenidone can potentially slow its progress, a lung transplant becomes your only hope.

When IPF struck my family, we banded together. I moved continents. But we were also beset by charlatans; one man telephoned me to assure me his herbal remedy could cure it. When there’s no cure and no cause, people become desperate — and, perhaps inevitably, people take advantage. As a well-educated family with a science background, we weren’t vulnerable. Many people will be.

It’s Global Pulmonary Fibrosis Awareness Month. So many people have been touched by this condition, but not enough is known, and nowhere near enough research is being done (although institutions like UCSF and Johns Hopkins are making an enormous difference).

As rose mcgowan, whose dad sadly died of IPF, told Mediaplanet:

I know it’s a cliché, but knowledge is power. If more people know about IPF, and more doctors know about it, then more people can get the help they need. A lot of people, including my dad, have the experience of being misdiagnosed. You have to keep fighting, fight for a diagnosis.

Organizations like the Pulmonary Fibrosis Foundation help to drive awareness, fund research, and provide better resources to patients and their families. They are on the front lines, acting as connectors. As the condition becomes more widely-known, more people can be correctly diagnosed, and the chances of finding a cure increase.

Most importantly: IPF has become a very personal part of my family’s journey, like three million other families around the world. If it’s a part of yours, you should know that you’re not alone.

Writer: of code, fiction, and strategy. Trying to work for social good.

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