Monday, April 29, 2013

A Sjogren's Awareness Story

Something We Can All Do: Spread the Word
Julia from Reasonably Well just asked if others had Sjogren’s Awareness experiences to share--and Julia, I do have a story for you and others Sjoggies

In the past, I have participated in what the Sjogren's Foundation calls a Walkabout.  It's a way for patients to raise awareness about the disease while also asking family and friends to join them and make donations.  Now, I don't have official confirmation for this but my guess is that these events are called  Walkabouts since they are actually relatively short walks.  But that is the beauty of them -- patients with autoimmune disease can participate without having to do a taxing competitive event.

So I sported my Sjogren's tee-shirt and joined the other walkers on a sunny, chilly morning.  Besides walkers, there weren’t many people out on the street.   While I enjoyed the walk and the camaraderie of being with others with Sjogrens, I did question whether we were really having much of an impact.  Where were the crowds I had seen at other advocacy walks and the publicity that often accompanies them?

But in the midst of these thoughts, as I was leaving the walkabout I had an interaction that ended up changing my perspective and turned out to be the highlight of that day for me. 

Two young women probably in their early twenties came up to me and asked:  “Can you tell us what this walk is for?  The guy over there," pointing at a spectator, "said it was for people who need to drink a lot of water.”

While there was some grain of truth to the man's description, it certainly is not, as we Sjoggies too well know, anywhere near the real story.  How was I going to explain Sjogren's in a sound bite?  Well, I thought to myself, it might not even be possible to do the disease justice without boring the women. I then figured that keeping it simple might be the best way to go.  The first thing that popped into my head was Venus Williams--a multiple grand slam tennis star with whom most Americans are familiar who also happens to have Sjogren's.

So here’s how the conversation went.

“You’ve heard of Venus Williams, right?"

“Yeah of course”, they said nodding their heads.

“You know how she had to drop out of the US Open a few years back.”  (They were definitely interested now.)  “Well, it was because she has this autoimmune disease called Show-grins." (It might sound goofy, but I always tell people to think of it like this... Show-me-your-grin or Show-grins to help get the pronunciation right). 

They repeated it.

Then I continued, “It’s where your immune system attacks the wrong things like your own body and it can be very debilitating. So that's what we're walking for.” (At that point, I realized that I didn’t need to say more.)

They smiled and thanked me for taking the time and I thanked them asking.  Off I went on with the rest of my day.

But here’s what I realized is important.  Our conversation jogged their memory back to when Venus was diagnosed.  It gave them a relatable figure to attach to this hard to pronounce disease.  The fact that Venus has decided to speak out and to recently become the Honorary Chair of the Sjogren’s Foundation’s Awareness Ambassador Program matters.  It brings attention to the disease and puts a very famous talented athlete behind Sjogren’s.   I’d like to believe that these two women will never forget Sjogren’s.

True, it was just one interaction, but two more people know a little something about Sjogren’s now.  Imagine what would happen if every Sjogren’s patient just educated two people about the disease a month or 24 a year. Then over 72 million more people would know what Sjogren’s is compared to just 365 days before.  Awareness campaigns do not become effective overnight, they really begin with everyday people deciding to take action.