It has been about 30 years since Cindy Coney was diagnosed with lupus. She was in her 20s and newly married.
“I went through the wild roller coaster of emotions that anyone would … but I absolutely refused to let lupus be the central focus of my life. I choose every single day to live life fully.”
Today at 58, Coney is a nationally known speaker, author and immediate past chairwoman of the Lupus Foundation of America. Despite taking multiple medicines to cope with the mysterious and misunderstood autoimmune disease, she tries every day to help other people with lupus learn to manage their illness.
Coney, who lives in Tampa, Fla., will be the keynote speaker Jan. 11 at the 13th annual North Carolina Lupus Summit in Charlotte. She’ll share some of the “things I’ve found helpful on my journey.”
One is to monitor self-destructive thinking. “When you’re living with a chronic illness, it’s easy to be afraid of the future,” she said. But when she gets scared and starts wondering whether she’ll be around to share milestones in the lives of her two adopted daughters, she stops herself. “I tell myself, ‘Cindy, that is not helpful. Not helpful.’ And I bring myself back to today.”
Coney said she purposely chose to take strong medicines, which could have serious long-term side effects. She did that, she said, so she could “enjoy my children growing up,” even if it means the possibility of more complications later.
Lupus affects Coney’s joints and eyes. She worries about losing her sight, and she has been close to death at least twice because of infections. She’s more susceptible, she said, because the medicines, and the illness, weaken her immune system.
About 1.5 million people in the United States have lupus. The cause is unknown, there is no cure and it is difficult to diagnose partly because it attacks different parts of the body depending on the affected person. “It can mimic so many other things,” Coney said. “And it looks different in almost every single person, so imagine trying to figure out what it is.”
It’s hard to live with because it’s easy to overlook, hidden from view and with a range of symptoms. Lupus is debilitating and can be fatal, but Coney said research remains underfunded.
“If you say you have cancer, I know what that is,” she said. But many people don’t understand lupus. “When I tell someone I have lupus, I want them to know what it is. We need awareness. We need new medications.”
Benlysta, approved by the Food and Drug Administration in 2011, is the “only drug that’s been approved for lupus in these past 50 years,” Coney said. Most of the other drugs, such as Cytoxan and prednisone, were approved for other diseases and are used “off-label” for lupus.
Coney said she took Cytoxan and it left her infertile. She exercises regularly and tries to stay as healthy as she can, both physically and mentally.
“I walk every day. I really love life. It doesn’t mean I don’t have the days where I’m sad or angry or frustrated. But everybody has challenges,” she said. “I have to stay focused on the good things. It brings me great joy to be able to talk to people, to think about making their lives a little bit easier. Being able to do the work that I do is the gift.”
Garloch: firstname.lastname@example.org or 704-358-5078
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