In ancient accounts, miracles arrive to heal lepers and free them from outcast status. Now antibiotics can cure leprosy, and two Florida women are out to eradicate the stigma of this growing scourge in the state.
Christina Roach, 42, of Tallahassee and Ann Solomon, 72, of St. Augustine are forming a group that aims to support those who have heard the news they have leprosy and spread the word among medical providers to help them recognize the symptoms of the disease among their patients.
“Because it’s a very old world, people have really bizarre thoughts about what all that looks like and … most people aren’t even aware that it still even exists,” said Solomon, a retired educator.
Is leprosy still an illness today?
Because of the stigma attached to it, doctors prefer to use the name “Hansen’s disease” to describe the chronic infectious disease caused mainly by a type of bacteria, Mycobacterium leprae.
It is named after Norwegian physician Gerhard Armauer Hansen who in 1873 discovered the bacterium that causes the illness.
The uptick in cases is drawing growing attention. In 2023, the Centers for Disease Control and Prevention published a paper saying evidence is rising that the disease is becoming endemic — in other words, common — in Central Florida. Central Florida accounts for 81% of the Florida cases and one-fifth of the nationally reported cases, according to the paper.
What is the main cause of leprosy?
The concentration of cases in Central Florida points to the nine-banded armadillo as the chief cause, scientists believe. They burrow in their dirt, leaving the bacteria there when they defecate or through lesions in the skin. One transmission theory is that humans are getting infected when people with small cuts on their hands handle soil where the armadillo has burrowed.
But the long period between getting exposed and developing leprosy makes it hard to pinpoint the source of infection. It can be up to 20 years after encountering the bacteria that leprosy develops.
Ironically enough, considering humanity’s long history of leper colonies, person-to-person transmission is relatively rare and only in cases of prolonged contact with someone before they start getting treated.
Dr. Kiran Motaparthi, a clinical professor of dermatology at UF Health, part of the multidisciplinary leprosy clinic that UF formed in 2023, said that leper colonies had no medical purpose.
“Isolating them was not helpful,” he said.
Because of genetics and immunity, 95% of the population won’t contract leprosy, even if they encounter the bacteria, according to the CDC.
Still, gardeners working in the Florida dirt where armadillos are about are urged to wear gloves.
What are the symptoms of leprosy?
Roach can’t pinpoint where she was exposed to the bacteria that causes the disease, and neither can Solomon.
Solomon gardens and Roach has done a lot of camping. And they both live or have lived in zones where armadillos roam.
Despite Florida’s concentration of leprosy cases, patient after patient at the University of Florida Health’s leprosy clinic relate twisting paths before receiving the proper diagnosis.
Left untreated, leprosy can exact a terrible price: blindness, paralyzed extremities, disfigured face, and painful or tender nerves, according to the CDC.
First, Tallahassee’s Roach went to her primary care doctor and dermatologists seeking answers to why she was experiencing nerve pain, numbness and then splotches on her skin. She went through MRIs and neurology exams.
“I was saying, ‘I’m 42, what’s going on?’” she recounted.
After extensive Googling, she went to a final dermatologist and asked for a biopsy.
“It was such a rare symptom combination and what kept popping up is leprosy, Hansen’s disease,” she said. “I remember saying it to my sister-in-law and she was like, ‘No!’ and I said, ‘I’m going to say it out loud to a doctor.’”
Getting a biopsy doesn’t always work, though. St. Augustine’s Solomon had five biopsies that failed to come up with an answer.
How is leprosy treated?
The treatment, leprosy patients often discover, doesn’t go down easily.
“I thought you would just take an antibiotic and be done with it but it’s a lot more than that,” Roach said.
Antibiotics are involved but their attack on the infecting bacteria causes the release of vast amounts of bacterial antigens into the blood stream, which triggers the patient’s immune system to launch an all-out attack that can cause its own set of symptoms like edema, when fluid is trapped in body tissues. Steroids will be prescribed to manage that autoimmune response, but they have their own problems, Roach says.
“Your bone density decreases, you can lose hair.” Roach said. “There’s mood swings, weight gain — all those things that can really change your lifestyle.”
She also had to negotiate things like telling her friends and her partner, who had questions about their health and whether they should get tested.
“It’s understandable,” Roach.
She and Solomon are looking for an antidote for the isolation that comes with having this relatively rare disease.
“I’m only halfway through my treatment and it’s been a big roller coaster,” Roach said. “People should know this disease is around. And it’s not a death sentence.”
The Hansen’s Disease Peer Support Group meets via Zoom, on a flexible basis, determined by group availability, to overcome the isolation that the disease can cause. If you’re interested in sharing the lived experience of leprosy, email clouiseroach@gmail.com or call 850-273-8285.
Anne Geggis is statewide reporter for the USA TODAY NETWORK FLORIDA, reporting on health and senior issues. If you have news tips, please send them to ageggis@usatodayco.com. You can get all of Florida’s best content directly in your inbox each weekday by signing up for the free newsletter, Florida TODAY, at https://palmbeachpost.com/newsletters.
This article originally appeared on Sarasota Herald-Tribune: Leprosy is still spreading in Florida. These women want that to change
Reporting by Anne Geggis, USA TODAY NETWORK FLORIDA / Sarasota Herald-Tribune
USA TODAY Network via Reuters Connect
By Anne Geggis, USA TODAY NETWORK FLORIDA | USA TODAY Network
