May 14, 2013
LIMA — For Joyce Burton, although she appears healthy, lupus has affected her everyday life.
Lupus is an autoimmune disease that causes inflammation in the joints and the organs, causes rashes, fatigue and a variety of other symptoms. It’s a spectrum disease, meaning there are several forms of lupus.
For Burton, she loves to play with her two St. Bernards, and in the past, has enjoyed landscaping, repurposing antique furniture, among other hobbies. However, because she suffers from lupus, she has to limit her time doing a lot of the things she loves when she develops flare-ups.
“I’m never going to be active like I was before,” said Burton, 56, of Lima. “When you’re in pain, you just can’t do those things…. But I’ve managed to keep working and keep as active as I can.”
She suffers from systemic lupus, which particularly affects her joints. She was diagnosed with the disease three years ago, but believes she suffered from it for years before that. She said she’s thankful she’s been able to keep her job as a secretary, and has very understanding co-workers.
According to the Lupus Foundation of America, it’s estimated that more than 1.5 million Americans suffer from some form of lupus. And because the symptoms are so varied, often coming and going, it’s often a difficult disease to diagnose.
Even though many people suffer from it, Burton sometimes feels isolated in her struggle, so she’s attended support groups the Lupus Education Awareness Project of Lima has organized.
Lupus Education Awareness Project
The project, through the local organization Connected Hands Helping Others, tries to assist those with lupus in a variety of ways. The group was created in 2011 thanks to grant funding. A local rheumatologist also suggested there was a need, said Francine Russell, a community health worker with Connected Hands.
“We try to be here for a broad spectrum of whatever they need, whether they need their house cleaned, or they may need transportation, they need to get to the doctor, they need the doctor to be aware of something,” Russell said. “They also need the support, want them to be able to correspond with other people who have lupus.”
There are four primary types of lupus: systemic lupus, like what Burton has, drug-induced lupus, discoid lupus, which mostly affects the skin with rashes, and neonatal lupus, when a child develops a temporary form of lupus.
Ninety percent of lupus sufferers are women. Minority women are particularly susceptable, although it’s unclear exactly why the disease develops.
The group hosts two support group meetings at two Lima locations: at Lima Towers on the second Thursday of the month at 1 p.m., and at Crossroads Church of God, on the third Monday of the month in the evening.
All services the Lupus Education Awareness Project provides, including testing, are provided confidentially and free of charge.
Living with lupus
Although there is no cure, there are several forms of treatment to better tolerate the pain.
For Burton, when she develops a flare-up, it creates a domino effect in her life. She takes medication much of the time, but it doesn’t help 100 percent. A lot of the time, she can feel the flare-ups begin to develop, which often makes her anxious.
“You have to learn what to do to manage, try to control those things. If you can control the anxiety, you can control a lot of the symptoms, at least with me,” she said.
It’s easy for her to get depressed about it, because she knows she needs to take her time. There are other times when she may go weeks or months without a flare-up. But when it does affect her, it can be really tough.
“When it gets really bad, it just feels like someone just beat me all over because you’re so sore and so tender,” Burton said.
Those with lupus are likely to suffer from other conditions, too, like fibromyalgia, osteoporosis and arthritis. In fact, she also suffers from fibromyalgia and osteo-arthritis. And because fibromyalgia is similar to lupus, those who suffer from either condition come to the meetings to support and learn about one another.
Overall, Burton wants people to know that people shouldn’t judge her at face value.
“You can look healthy. You can look at me. I look healthy,” she said. “But you don’t know how I feel on the inside.”
• To learn more about lupus, the public is invited to a dinner and presentation at New Life Christian Ministries from 5 to 7 p.m. May 21. Registration is required by May 16 by calling 567-712-2298 or emailing firstname.lastname@example.org. The program will feature speakers Dr. Kemi Azeez, of Internal Medicine Specialties in Lima, on managing chronic diseases and Suzanne Tierney, of the Lupus Foundaton of America, on her group’s plans for services in this area. Purple is the color for lupus support, and organizers encourage those who attend to wear something of that color.