Learning How to Better ‘Market’ Ourselves With Rare Disease Advocacy

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by Samuel Kirton |

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Is 90% of a message’s effectiveness dependent upon the way it is delivered? In terms of our rare disease, how important are the words we use to describe it?

Many of us with a rare disease only learned about it when we were diagnosed, so we shouldn’t be surprised when others aren’t familiar with it, either. How we tell them about our disease can often be turned into a series of teachable moments.

Words matter

In the months leading up to my diagnosis, I had countless appointments with people like my primary care physician and my pulmonologist, among others. I had chest X-rays, CT scans, and other procedures. And each time I heard a new term I wasn’t familiar with, I’d make a note to look it up later.

On the day I was diagnosed, with my wife, Susan, by my side, we asked a number of questions before we left the appointment. When we reached my truck in the parking lot afterward, we both went into search mode using our smartphones.

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In the beginning

In hindsight, I now view the way I would explain idiopathic pulmonary fibrosis (IPF) to others as vulgar. In situations where I would have an opportunity to share my diagnosis, I’d describe IPF as a terminal lung disease of unknown origin and that has no cure.

While technically correct, that is a shocking description that almost instantly makes people uncomfortable. What are you supposed to do if you are the one receiving that message? Some people would change the subject, while others would simply excuse themselves.

Refining the message

Once I noticed their reactions, I knew that to help others understand IPF and increase awareness when given the opportunity, I had to express myself in a kinder, gentler way. The disease didn’t change, of course, so I had to change the words I used to describe it.

In most instances, there was no need to shock anyone. I began to describe IPF as a chronic, progressive lung disease of unknown origin. It was a gentler description that invited further discussion.

Marketing opportunities

What do we patients do when a marketing opportunity presents itself? And how do we get a marketing opportunity to present itself?

The title of my column, “Make Every Breath Count,” is also my mantra. Following my diagnosis, I decided to add another tattoo that runs from my left wrist to my elbow with this statement. It’s a great conversation starter. This is what I mean when I say that every time we explain our disease is a marketing opportunity.

rare disease advocacy | Pulmonary Fibrosis News | A snapshot shows Sam smiling at a table on a deck overlooking a body of water. A tattoo on his forearm is visible.

“Make every breath count” is not only my mantra, it’s also a conversation starter. (Courtesy of Sam Kirton)

Using your voice

How can you use your voice while describing your disease? By getting involved in advocacy to raise awareness and share your story.

For example, the Pulmonary Fibrosis Foundation Hill Day is coming up in March. You can use your voice to ask lawmakers to fund additional research toward treatments and a cure. Describing your disease to lawmakers can be an important factor in gaining support for additional funding from Congress. It’s just one more way that we can “Make Every Breath Count.”

Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.


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