WTF is IPF… and Now What Do I Do?

I have lost two cousins and a very inspiring friend to idiopathic pulmonary fibrosis (IPF).

So I’m very aware that:

  1. There’s a genetic component to the disease (if more than one person in your fam has/had it though, and you get it too, it’s no longer called “idiopathic,” because that word indicates unknown origin—instead it’s “familial pulmonary fibrosis”)
  2. Many people live only three to five years after they’re diagnosed. The thick, stiff scars (fibroids) that form on tissue deep in the lungs causes respiratory failure (among other, less common things) that leads to death
  3. It affects middle-aged people (and you guessed it, that would be me…)
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But I also know that there are things I can do now that may help if the unknown and mysterious switch that turns on my IPF gene, somehow gets flipped.

For one, I can stay in good shape, which may help me qualify for a lung transplant, the only “cure” possible.

Also, there are new medicines making their way to the market that may slow the progression of the disease. You can bet I’m keeping an eye on those!

And I can educate myself and connect with the IPF community of incredibly courageous and inspiring patients and caregivers for whom IPF is an unwelcome reality.

If you go to the Pulmonary Fibrosis Foundation’s (PFF) website, you’ll find a monthly calendar chock full of events. For example, April 14th is Pulmonary Fibrosis Education Day in Charleston, South Carolina, USA. The calendar has something for everyone, from support group meetings, to memorial and fundraising walks/runs/trivia nights, to programs for caregivers.

Don’t see anything that appeals to you? Create your own event!


EmpatheticBadass

EmpatheticBadass

EmpatheticBadass is a young-at-heart writer from Ohio (Go, Bobcats & The Marching 110!)) who is passionate about being a voice for the patient perspective.

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