"Dying. What do you mean, dying?" She didn't see herself as a person close to death. She felt full of vitality, even more so because she was the mother of a three-year-old.

When the rheumatologist gave Mireya Cuesta her diagnosis in 2009, she did not understand. She had only gone to the doctor because of fatigue so overpowering that she couldn’t get up from a chair.

She expected to be told to rest, take some vitamins and in a few days, return to her routine in Barranquilla. But her routine, as she knew it at the age of 25, would never be the same again.

“And what is that, doctor?” she asked.

“You're going to die. You have six months left," was all she heard, or can remember hearing.

"Dying. What do you mean, dying?" She didn't see herself as a person close to death. She felt full of vitality, even more so because she was the mother of a three-year-old.

The doctor's words triggered a nervous breakdown, and as is often the case with this autoimmune disease she had just been diagnosed with, one symptom leads to another. Her body attacked itself and the next target was her brain. Within hours, she began to experience hallucinations.

Her family was alarmed as soon as they saw her arrive home. They thought she had been drugged, so they took her to the clinic and it was there that she told them what was wrong.

"Mom, I have lupus,” she said.

At that moment, Mireya joined a growing number of patients in the Systemic Lupus Erythematosus (SLE) in Colombia, one of the countries with the highest prevalence of lupus in the world.

A 2019 study titled Prevalence of Systemic Lupus Erythematosus in Colombia: data from the national health registry 2012-2016 estimates there are 91.9 cases per 100,000 inhabitants. That rate is close to the highest levels of other regions such as those on the Asian continent, where it can reach up to 103 cases per 100,000 people, according to the Global Epidemiology of Systemic Lupus Erythematosus in the journal Nature Reviews Rheumatology.

The high prevalence of lupus can be explained by an improvement in diagnosis times and the increased survival of those affected, according to researchers.

The research also confirms that the disease mainly affects women -- out of every 8 cases, only one patient is a male. Data from the Ministry of Health shows that of 283,623 people treated for SLE between 2015 and 2021, 89.19% were women.

Source: Ministry of Health and Social Protection of Colombia

Lack of Rheumatologists

In 2009, after Mireya recovered from the hallucinations which were actually episodes of schizophrenia caused by lupus, she was treated at the Clínica de la Costa in Barranquilla. There, they eased her greatest fear. She was not going to die if she received proper treatment.

Fortunately, she was in one of the cities where there are rheumatologists, but that is not the case throughout the country. In total, there are only 260 specialists for the entire country, in Bogota, Medellin, Cali and the capital of the Atlantic, according to Dr. Ana Maria Arredondo, president of the Colombian Association of Rheumatology (ASOREUMA).

Dr. Arredondo attributes the lack of availability to the fact that in some municipalities there is no equipment available for examinations such as musculoskeletal ultrasound or bone densitometry. Specialized programs in rheumatology are only offered at nine universities -- six in Bogotá, two in Medellín and one in Cali.

"This means that patients suspected of having this type of disease cannot easily get a doctor’s appointment and they have to travel from as far away as the Amazon to see a rheumatologist," Dr. Arredondo says.

Difficulty of Working

Although Mireya was able to get specialists to treat her, what she could not escape was the difficulty of holding down a job with her disease. The job market is tough for women in Colombia, where the unemployment rate is15.6% for women compared to 9.6% for men, according to March 2022 statistics from the National Administrative Department of Statistics (DANE).

For workers with lupus, the situation is more difficult. Many companies prefer not to hire people with lupus to avoid granting medical leave or rest periods for a condition that is aggravated by work-related stress.

Mireya tried several times to return to her job in a bank but each time, after a few months a new symptom appeared -- hypertension, kidney problems (lupus nephritis) and lung problems. Three years after she was diagnosed, she was totally incapacitated and three years after that, she was put on a pension. It was clear that in her 30s she would not go back to work because the lupus would worsen and cause more damage to her organs.

Dr. Arredondo says SLE has an outsized impact on working-age women. The number of cases is highest in patients between the ages of 30 and 59 years old.

"Many are women who are of reproductive and working age, who feel that they should be useful to society, to their families, but for whom rheumatic diseases cause a type of limitation," Dr. Arredondo says.

Lack of Legislation

To overcome the challenges of finding and holding a job, access to specialists, treatment and medical coverage, Fundación Lupus Colombia believes that a regulation for patients with autoimmune diseases, such as Law 1,392 on Orphan Diseases, enacted in 2010, is necessary.

"We tried to get lupus included in this legislation, but the ministry told us that it did not have the minimum prevalence to be included. That is why we must try to make them listen to us and not be left out," says the Fundación’s director, Rafael Gutiérrez.

The Ministry of Health is evaluating the inclusion of autoimmune diseases in a 10-year plan which includes the priorities for the health care system and would improve the speed of diagnosis and early referral, according to Dr. Arredondo.

While these measures are being considered, Mireya has not stopped sharing her experiences with each new patient she meets. She insists that no one should live with the anguish of thinking they are carrying a death sentence because they have lupus. On the contrary, she says, it is a disease that helps patients find their own reasons for living with lupus. In Mireya’s case, the reason is her son.

Progress on SLE fronts

Dr. Gloria Vásquez, professor of the Rheumatology Group and the Cellular Immunology and Immunogenetics Group of the University of Antioquia, says there are several ongoing research studies in Colombia. Research is being done on the immunological phenomena existing in patients and the genetic characteristics of the disease, the relationship with some environmental events and pathophysiological mechanisms.

The Colombian Association of Rheumatology is encouraged that the Ministry of Health is considering including autoimmune diseases in a 10-year plan that establishes priorities for the health care system. That would improve the speed of diagnosis and early referral, as well as the data on how many patients there are and what barriers they face.