Heather Boerner is an award-winning journalist who specializes in storytelling on healthcare issues. She's most interested in how people choose between equally important needs.
How does a pair of friends coming together to help a sick friend become a group of 80 and more than $80,000 raised for lupus research? To understand the answer you must know the charismatic Marissa Tachereon Whedon, her famous family and friends, and the power of Twitter. The Whedonverse doesn't hurt, either.
As Flo Rida sings, “She hit the flo’/ Next thing you know/Shawty got low low low low low low,” former dancer Jana Eshaghian mugs for her daughters and bends her knees. She feels her stiff joints ease, her muscles stretch, and the synovial fluid circulate. And, well, she tries to get low.
“I get a little low,” she jokes. “It’s fun, so silly. It’s like I can remember what my body was like and I can feel it. I know it’s still in there, that I’m not just this disabled person. I’m all me.”
The approval of Benlysta—the first lupus drug in more than 50 years—ushers in a new era of treatment.
Cyndy Spaulding has a lot to say about books she's read, about the news, about politics.
But as her lupus has progressed, it's harder for her to get the words out and hold on to her thoughts long enough to carcy on those conversations.
"It's like looking for a lost file on a computer: Sometimes it takes a while to find it, and it's hard to have an intelligent conversation," says the Sarasota, FL,60-year-old who was diagnosed with lupus in 1991. "Sometimes you just wish you could say, 'Please step into my body and you will know what's happening to me."'
Spaulding is not alone. Between 20 percent and 50 percent of people with lupus experience some effect on their cognitive function. And just like other lupus symptoms, cognitive dysfunction is treatable.