Her bones grind together. Her body is burning. Her legs lock.
This is what it’s like to live with systemic lupus erythematosus, said Adoabi Ugochukwu. Lupus is an autoimmune disease where the immune system attacks the body’s tissue.
She’s had lupus since she was 10 years old but wasn’t diagnosed till she was 15.
Ugochukwu, now 22, doesn’t want other lupus patients to suffer in silence, so she’s creating a support group in Gainesville for lupus patients. Starting in September, the group will meet on Saturdays in either a room at UF Health Shands Hospital or another location, she said.
She said the constant pain is manageable through medication, but there’s no medication to take for the emotional part of dealing with lupus. That’s why she’s putting the group together. The last time Gainesville had a lupus support group was five years ago.
“The best way to approach a disease like this is through emotional support,” she said.
With the idea planted, Ugochukwu started looking for lupus patients.
In March, the University of Florida biochemistry senior was a guest speaker in a seminar hosted by the Lupus Foundation of Florida at UF Health Shands. There, she met Amy Cummings-Aponte and Penelope Troutman-Bellamy who both suffer from lupus.
The women told Ugochukwu their stories about living with lupus and told her they wanted to join the support group. A similar theme was laced in their stories – no one understood what lupus was or what they were going through.
Troutman-Bellamy said she hopes the support group will focus on lupus education and awareness.
“I would like to see our support group provide information (to group members) and get their questions answered and provide support for each other,” she said.
The main purpose of the support group is for people to understand lupus, she said.
Lupus is like an invisible disease, Ugochukwu said. It attacks the body internally and can affect joints, skin, kidneys, heart, lungs, blood or the brain. Sometimes it can leave a rash, but for the most part it’s invisible. It’s also difficult to diagnose.
It took doctors several years to diagnose Cumming’s-Aponte with lupus. She said doctors wrote her rashes off as allergies and prescribed her an epinephrine pen. But the rashes and swelling continued.
Cummings-Aponte said she looks back at her childhood, and she sees the early signs of lupus such as her lack of energy and feeling fatigue.
“It was written off as I was being lazy,” she said.
She said she suspected she had some type of condition when she had a major flair about 13 years ago when she caught a virus while on vacation in Washington, D.C. Her immune system was down, and she was confined to her bed for days.
“It felt like somebody had literally nailed my body to the bed, and I literally couldn’t lift my arms,” she said. “It felt like I was glued to the bed.”
She said she’s made peace with her disease and finds ways to cope such as doing Yoga and meditating. When she starts feeling fatigued, she lies down and watches Netflix on her iPad to keep herself busy.
“You’re fatigued, but your brain hasn’t shut off,” she said.
Patients with lupus are often diagnosed as having diabetes or rheumatoid arthritis, said Dr. Joseph Larkin an associate professor in the department of microbiology and cell science at UF. Lupus tends to overlap many diseases or show flu like symptoms such as aching joints, fever and feeling fatigued, he said.
“A lot of what happens in lupus is things that have happened to someone at some point in their life,” Larkin said.
But with lupus patients, they feel this way all the time, he said. Another side affect is the brain doesn’t get proper blood flow, which can cause depression, Larkin said. This is why a lupus support group is essential for patients.
“If you feel that you’re alone that makes everything much harder,” he said. “There’s strength in numbers.”
Cummings-Aponte and Troutman-Bellamy are looking forward to expressing their struggles with an understanding audience in September.
“The information about lupus isn’t really out there,” she said.