IPF: Here’s How to Empower Patients Who’ve Given Up Hope

“You’ve come a long way, baby!” was a hugely popular phrase back in the late 1960s that I grew up with and still refer to often. I often say it when I see something cool—like advances in medicine and technology.

For people who aren’t familiar with the saying, it came from a Virginia Slims cigarette ad campaign that was marketed to women. Sadly, it still is, only the tagline has changed.

Bear with me, I’m not suggesting that pulmonary fibrosis has a direct link or is caused by smoking cigarettes. Although nothing would surprise me when it comes to the dangers of smoking.

Today, when I came across a website called Patients Like Me, I have to say I was very impressed. We HAVE come a long way baby in the pulmonary fibrosis community!

When I grew up, we just had talking, movies, and the TV to amuse ourselves. We had to read books and magazines to educate ourselves. You got me? Yeah…

Well, at my first look at the site, I plugged in pulmonary fibrosis. Lo and behold, a video clip of “Brian” appeared, which I watched. Brian has idiopathic pulmonary fibrosis (IPF). Instead of hiding in the shadows, he’s totally “out there,” encouraging others to join the site.

From what I gather, Patients Like Me encourages people who live with rare diseases to register in order to help

  • scientists,
  • pharmaceutical and biotech companies,
  • and the medical community

better understand the disease and ultimately fight it.

It also displays the symptoms of the disease, plus lifestyle adjustments and treatments that people take for their IPF including symptom management.

What I also really liked is that the graphics are really easy to understand in very simple terms. It’s helpful. Especially if a patient or loved one is looking to see what medications other people are taking who live with the disease.

We really have come a long way! Although we still have a long way to go. There is still no cure for IPF. For now, there are treatments available to help slow the progression of the disease. And this website is helping others in the IPF community to connect and find support.

Alisha Stone

Alisha Stone

Alisha Stone has a BA in psychology and is dedicated to improving the lives of others living with chronic illnesses.

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