On Children’s Day 2023, 11-year-old Sophie Azevedo didn’t get out of bed. Her mother, Aline Affonso, 41, thought it was a joke, but the girl couldn’t stop crying when she stood up. In less than 15 days, the pain was so constant and intense that she needed a wheelchair.
The answer to the mystery took weeks to come out and came by luck. The child’s grandmother mentioned the case to her dermatologist, who currently treats the family, and he was the one who put the riddle to rest. Sophie had leprosy, and not just her. His mother and aunt also lived with the disease for decades without realizing it and receiving dozens of wrong diagnoses.
What is leprosy?
Leprosy is a disease caused by bacteria transmitted through the airways. However, it is not as contagious as Covid-19 or respiratory viral diseases. To become infected, you need a combination of two factors: susceptibility (which is not yet well understood by science, it is believed that there are genetic factors) and prolonged contact (generally 3 to 5 years) with a patient who has the disease and not undergoing treatment.
The first doses of antibiotics are enough to interrupt transmission, and treatment is simple. However, leprosy is still considered a neglected disease, associated with poverty and lack of basic sanitation.
Contrary to what most people imagine, however, the disease is primarily neurological and not dermatological, that is, skin symptoms are not always evident and can often go unnoticed.
“Due to prejudice, leprosy is increasingly neglected and many patients face stigmatization”, says dermatologist and leprosy specialist Fred Bernardes Filho, from Ribeirão Preto (SP), who treats the family. “Some estimates indicate that for every diagnosed case, there are at least eight silent ones”, he indicates.
As the disease needs persistence to manifest itself, when there is a diagnosis among children and young people, as is the case with Sophie, this factor is indicative of recent community transmission and also the inefficiency of control programs.
“Around 6% of children diagnosed with leprosy today in Brazil have grade 2 disability, the highest of them. It is evidence of advanced disease, late diagnosis and the possibility of irreversible sequelae”, points out the doctor.
Sophie’s case
After the first symptoms, Aline gave her daughter anti-inflammatories and waited for the pain to go away, which it did not. After two days of being unable to walk, the family took her to the emergency room. The first diagnosis received was a spur (an abnormal growth of the foot bone), made without examinations.
When taking Sophie to an appointment with the orthopedist, the idea of spurs was discarded. Although they found no justification for the case, the doctors bandaged the girl’s leg and sent her back after 10 days of absolute rest.
“That left me unsatisfied. I wanted a correct diagnosis for my daughter. Within a week she had gone from having pain in her leg to not being able to even move with a walker, we had to ask for donations to put her in a wheelchair. If it weren’t for Fabio Carille, Santos’ coach, donating the chair, I would have had to carry my daughter on my arm”, remembers Aline.
The mother mobilized the family to try to find an answer. Sophie’s grandmother, who already had an appointment with Bernardes, ended up discussing her granddaughter’s case with him. “From inside the office, he called me and explained everything about leprosy and asked me to take her there urgently. That’s what saved her,” she says.
Late diagnosis
Although the evolution of Sophie’s symptoms seemed to have been rapid, in fact the family had been living with leprosy for years without realizing it. In addition to the girl being diagnosed, the mother also took a quick test that came back positive for the disease. She had been living with pain for 10 years that had been incorrectly diagnosed as fibromyalgia. The girl’s aunt was also treated for the same disease incorrectly.
“I suffered from intense pain, I got sick easily, I had many health problems caused by leprosy without realizing it,” says Aline. The final diagnostic exams for both, carried out thanks to discounts and donations, indicated that of Sophie’s eight nerves evaluated, seven suggested contamination by the bacteria.
The symptoms of leprosy
The neurological symptoms of the disease (tingling and numbness in the hands or feet, nocturnal cramps, burning muscles, sensations of needles or shocks) generally precede the dermatological manifestations (white or reddish spots, small or large lumps, skin with a “peel peel” appearance). orange”, focal hair loss) in months or even years.
On Sophie, the skin patches were extremely subtle, but small areas of her arm were no longer sensitive. “Leprosy spots are often discreet and untrained eyes may have difficulty identifying them,” explains Bernardes.
Although leg pain is what brought the family to the hospital, several other symptoms had previously been overlooked. Sophie felt her hands fail and she dropped some objects. At age 7, she had intense pain in her legs that was interpreted as growing pains. In no consultation, whether for the mother or the daughter, was the hypothesis of leprosy raised.
After just one month of antibiotic treatment, at the end of November, Sophie was able to walk again. “The day she told me she could feel her feet again, I cried a lot. She wanted to put her foot down and walk again, it was a very magical moment for me”, remembers Aline.
As leprosy is a disease caused by bacteria, with the death of the disease-causing agents, the problems also disappear, as long as treatment is carried out in time.
Prejudice still persists
Prejudice against the disease still persists. Aline decided not to hide her or Sophie’s diagnosis so that more people can seek information from doctors. However, the choice had a weight. A friend of Sophie’s didn’t invite the girl to her birthday party.
“She was very sick. My daughter immediately understood that it was prejudice due to leprosy — she was invited every year, only this time she wasn’t. But this prejudice needs to be combated. May our story serve as a warning so that more people can be diagnosed and treated for a disease that currently has a cure”, concludes the mother.