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Local Group Working On Statewide Initative To Get More Florida Data On Lupus

Leon County Judge John Cooper on June 30, 2022, in a screen grab from The Florida Channel.
Marcelo Leal
The Florida Channel
Leon County Judge John Cooper on June 30, 2022, in a screen grab from The Florida Channel.
Leon County Judge John Cooper on June 30, 2022, in a screen grab from The Florida Channel.
Credit Marcelo Leal / Unsplash
The Florida Channel

May is Lupus Awareness Month. Allison Wiman is the Executive Director of Big Bend Area Health Education Center and the Big Bend Rural Health Network, which serves several counties in the Florida Panhandle. She spoke with Sascha Cordner about how her group is working toward a statewide initiative to get more data on Lupus and bring more awareness to the hard-to-diagnose disease. Listen to the story!

SASCHA CORDNER: First off, what is Lupus?

ALLISON WIMAN : So, Lupus is an auto-immune disease that disproportionately affects women, particularly minority women, and it can be very difficult to diagnose because the range of symptoms is so broad. So, many times, it will go undiagnosed for years and years. And, the sooner people get treatment, the better their outcome, so there’s really a push to raise lupus awareness and to really get information about lupus out into the community. So, people know to see their doctors and to start talking about it and maybe, suspect lupus—if there having some of the symptoms.

Now, you were saying it was a wide range of symptoms. Can you give some examples?

Sure. So, lupus can affect pretty much every system of the body. Some of the common symptoms are the butterfly rash across the face. People who have lupus usually have sun sensitivity. It can affect their kidneys. It can impact their mental capabilities. Fatigue is a very common symptom of lupus, and many days, they just wake up really, really tired and just not feeling well.

I know the Big Bend Rural Health Network hosted a summit sometime ago.

We did.

How were you able to do something like that, and is there anything you're working on now?

Well, we received a grant that allowed us to have some guest speakers and invite various people from the community, talk about lupus, and from that, we've established some great partnerships. Moving forward, we're working very closely with the Department of Health to really start collecting better data on lupus because it is so hard to diagnose and goes undiagnosed for years. Sometimes, it's hard to get a true prevalence rate of lupus. So, we're working with them, collecting better data, and then also, just getting the message out about what lupus is, who's impacted, and some resources for people who might be affected by lupus.

And, the data you're working it just for the counties in the Panhandle or is it for the whole of Florida?

No, this is for all of Florida. We're working on having lupus added to the Behavioral Risk Factor Surveillance Survey that CDC and DOH puts out. So, we'll be asking individuals who take part in the survey, "Have you been diagnosed with lupus?' is one thing we're doing.

And, then we're also getting at lupus statewide. We're having schools collect information on children who may be reporting lupus. Their parents report lupus. It's like a checklist when you start school. They ask you a whole host of conditions, 'do you have diabetes? Do you have this? Do you have that?' And, we're having lupus added to that list. And, then, also, at the end of the year, that will be reported to the Department of Health. So, we should start to get an idea of the prevalence of young lupus sufferers.

Is there anything else you'd like our listeners to know?

You know, I just think it's really important for people to pay attention to any sort know, lupus, like I said earlier, is really tricky to diagnose, and so, just by being aware of the symptoms of lupus and getting not only individuals, but physicians to think that lupus may be a possibility.

Lupus mimics a lot of other auto-immune diseases, but also some know, who doesn't wake up tired? So, I think it's just important to continue to try to educate the populations to try to raise awareness about lupus, so people can get diagnosed and get treatment earlier.

Well, thank you for talking to me.

Sure, sure.

For more news updates, follow Sascha Cordner on Twitter: @SaschaCordner .

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