A Conversation with NFL Player Raising Fibromyalgia Awareness

May 12 is Fibromyalgia Awareness Day, and the community now has a team player on their side. NFL player and Super Bowl champion Dominique Easley has raised 36 thousand dollars for fibromyalgia awareness and research since 2015 through fundraising activities and his website, Easley’s Awareness.

You might be wondering how fibromyalgia, a condition of chronic widespread pain, fatigue and a host of other symptoms, relates to a site on migraine? Migraine and fibromyalgia are comorbid conditions and an online survey at migraine.com in 2013 identified 24% of people with migraine were also suffering from fibromyalgia 1. Personally, I was diagnosed in 2012 during a bought of chronic migraine, and both conditions affect many I have spoken with in the community. So when I heard of Easley’s fundraising efforts, I felt a surge of hope. His sister, Destinee, suffers from fibromyalgia, which lead to his interest. Upcoming fundraising and awareness events are a football camp and a bowling event, both in Easley’s hometown of Staten Island, NY in June. I reached out and was able to talk to Easley. Below are some highlights from the conversation (note: the conversation is slightly condensed for flow and readability):

I read that Destinee was diagnosed in 2011. Do you want to tell me a little more about that?

Actually, she came to my college football game at UF [University of Florida] verses Tennessee. I was playing so I wasn’t there, but the story was she was feeling woozy because it was hot, so I guess she was dehydrated, and she kind of fainted a little bit. And from there on, she started going through sicknesses... which eventually led up to her being diagnosed with fibromyalgia.

Did she have any issues when she was younger or did it just come on suddenly?

Not that I know of.... That’s the day that I remember that it all started to happen.

What are your sister’s symptoms?

She can’t get up out of the bed, she feels sick, and I think the main part for her is her feet get swollen so she’s not really able to walk.

Was it difficult for you to accept the diagnosis in the beginning?

Just for the simple fact that I was in college and my sister, she was 11 years old and going through all this pain, and me not being able to even see her for so long.... Just getting a call that every other week that she’s in the hospital and I can’t do anything about it.

So how were you able to get through that and accept the diagnosis and connect with her?

Really, when I got in the NFL, and I met my public relations guy, Antone Barnes, we talked about many different charities that I wanted to do. I told him what my sister had and he had no idea what it was. So, just from then he read up on it, and he was like ‘yea, this would be great.’

What are some things you try to do to help Destinee?

Well, last year around June or July, she came up to Providence to try to go through acupuncture.... She did two weeks of his treatment. And I wouldn’t say it was a drastic change, but she’s said since she was up there for those two weeks she hasn’t slept like that before.

Do you think awareness needs to come first?

Yeah, I would think that making a difference is tied to awareness, because I guess in this situation… I'd never even heard of fibromyalgia before my sister had it. I think you have to bring awareness just so people will start reading up on it, and start wondering what it is. If somebody doesn’t wonder, it could be nobody’s out there fixing the problem. So yeah, I’d say awareness will bring the difference.

Is there a story that touched you pretty strongly that you’d like to share?

Actually, there was a little girl… I think about the same age as my sister. She reached out to me from Hawaii and told me her story.... It hit me more just because my sister and her were about the same age. They wound up getting in contact with each other and started talking with each other. That was something that took me by surprise.

If you wanted the world to understand just one thing about fibromyalgia, what would it be?

A lot of people don’t really believe what people say when somebody tries to explain to them how much pain they’re going through.... I guess listen more to a person when somebody is trying to tell you their opinion and everything like that.

What do you envision being able to happen with having created Easley's Awareness?  

The end goal is to find a cure. And build enough awareness and, really, funds to help as many people as possible.

I would like to give a shout out to Antone Barnes and Damani Goodson for making this interview possible, and of course a big thank you to Dominique Easley for his passion and efforts. For more information on Easley’s Awareness, Destinee’s story, and how to get involved visit easleysawareness.com and easleysawarenesscamp.info. For further information on fibromyalgia, you can visit the National Fibromyalgia & Chronic Pain Association at fmcpaware.org.

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