Lupus patients share what it's like to live with this silent and difficult-to-diagnose disease.

Every May 10th, World Lupus Day is commemorated, a day to raise awareness of this chronic, autoimmune, and heterogeneous disease that affects more than five million people worldwide.

Although lupus is not a new disease, it remains unknown to much of the population. Its clinical complexity and emotional impact make lupus a burden that many people, like Natalia Hernández and Valentina Veléz, face in silence and with difficulty.

Dr. Efraín Esteban, medical manager of Respiratory and Immunology for the AstraZeneca Andean Cluster, offers a detailed explanation of systemic lupus erythematosus (SLE) , the most common and severe type of the disease, which Natalia and Valentina suffer from.

“Systemic lupus erythematosus is a chronic and heterogeneous autoimmune disease,” explains Esteban. Simply put, it's a condition in which the immune system, which normally defends the body against viruses and bacteria, becomes dysregulated and begins to attack healthy tissues and organs.

Hence it is known as an "autoimmune" disease: the body attacks itself.

But it's not a uniform disease. Its presentation varies radically from patient to patient. Some have skin involvement with red, painful rashes; others suffer from joint inflammation, intense fatigue, or hair loss.

In more severe cases, it can affect vital organs such as the kidneys, heart, lungs, or even the brain. This diversity of symptoms, coupled with its intermittent nature (attacks that come and go), makes early diagnosis difficult.

It is called a heterogeneous disease, not only because of the organs it affects, but also because of the intensity and timing of its onset, since a patient with lupus may be stable for months and then suffer a severe relapse.

One of the biggest challenges with lupus is diagnosis. Natalia Hernández experienced it firsthand. She began at age 14 with symptoms such as unexplained fevers, hair loss, and muscle pain. She was transferred from specialty to specialty without clear answers.

"No one wanted to treat me. The pediatricians said it was a rheumatology issue, the rheumatologists said it was a pediatric issue. I spent two years unable to walk," he recalls.

According to Dr. Esteban, identifying it can take between two and six years. The main reason is its similarity to other diseases such as arthritis or dermatitis, depending on the symptoms.

The lack of medical suspicion is critical. Only a rheumatologist has the specialized knowledge to make a diagnosis, but in Colombia , it takes an average of two years for a patient to reach a diagnosis . During that time, the disease progresses, causing cumulative organ damage.

According to data presented by Esteban, 90 percent of lupus patients are women, particularly those of childbearing age (between 30 and 60 years old).

This high female prevalence is related to hormonal factors, although genetic and immunological components also play a role.

Valentina, diagnosed at age 20 , is an example of this profile. Although she always had a medical history, it was in college (between academic and emotional stress) that she began to notice warning signs : cramps, fatigue, generalized pain, and loss of mobility.

At first, she thought it was anxiety or somatization. “I had a scholarship, I trained volleyball, and I tried to be perfect at everything. But my body couldn't take it anymore,” she says.

Lupus is aggravated by stress and intense emotions , something that many patients like Valentina face at key stages of their lives: youth, college, and interpersonal relationships.

Lupus not only causes physical symptoms. It also profoundly impairs the emotional, social, and professional quality of life of those who suffer from it.

One of the most debilitating symptoms is fatigue , which can be extreme even without other visible signs. "Some patients can't even bathe without becoming exhausted," explains Esteban.

Added to this are daily restrictions such as avoiding sun exposure, physical exertion, taking multiple medications daily, attending constant checkups, and living with pain and the adverse effects of treatments.

Valentina explains it this way: “It's like waking up and not knowing what version of yourself you'll be that day. There are good days, pain-free, and others where you feel useless, sore, bloated, with no desire to do anything.”

Natalia, for her part, has learned to redefine what a good day means: “For me, if I can get out of bed on my own, it's a good day. Even if I have a fever, pain, or skin lesions. A bad day is when I can't, and yet life goes on, commitments continue, and there's no time to get sick.”

Once diagnosed, lupus cannot be cured; it can only be managed . Treatment aims to prevent the immune system from continuing to attack the body.

For this purpose, antimalarials (such as hydroxychloroquine), immunosuppressants (such as mycophenolate) and corticosteroids are used.

In more severe cases, biological therapies are incorporated (these consist of the use of biological substances, such as proteins, antibodies and cells, to treat diseases and disorders).

"Each of these treatments has benefits, but also risks. For example, corticosteroids relieve symptoms quickly, but they cause significant adverse effects: obesity, diabetes, osteoporosis, glaucoma," Esteban points out.

Valentina was treated with chemotherapy for several months. The results were positive, her symptoms diminished, and she stabilized. But the physical and psychological consequences were profound.

“My body changed completely. I lost all my muscle mass, I couldn't tolerate food, I vomited constantly, and seeing my reflection was very painful,” she says.

Natalia has also faced the treatment dilemma. At various stages, she has voluntarily withdrawn from medication, tired of overtreatment and the lack of comprehensive care. “I feel like an experiment. They stuff me with medication, but my quality of life remains the same or worse.”

One of the biggest myths about lupus is that it isn't fatal. Dr. Esteban forcefully refutes this: "A patient with lupus is 2.6 times more likely to die than a person without the disease."

Another common myth is that if symptoms are controlled, organ damage is also controlled. Lupus can progress silently and affect the kidneys, heart, or brain even if the patient feels well.

Self-medication with corticosteroids is also common. Many patients, aware of the rapid effects of these medications, use them without a prescription , which can be dangerous in the long run.

Valentina and Natalia agree on the urgent need for education. “We are facing a system that doesn't know how to treat us. If the public knew the symptoms, the warning signs, perhaps there would be earlier diagnoses and less suffering,” says Natalia.

“Change begins with education,” concludes Dr. Esteban. And he doesn't just mean patients. Training is urgently needed for primary care physicians, family members, employers, and the general public.

By identifying symptoms early, referring them to a specialist, and providing emotional support to the patient, their life story can be changed.

Today, both Valentina and Natalia continue their lives with lupus as a part of themselves, but not as a sentence.

“I feel better. I've learned to live with this, to accept it without letting it define me. I've been through the worst, and I know I can handle whatever comes next,” says Valentina.

For them, raising awareness about lupus isn't just a medical necessity. It's a way to reach out to others who still have no diagnosis, no answers, and no support.

ANGELA MARÍA PÁEZ RODRÍGUEZ - SCHOOL OF MULTIMEDIA JOURNALISM EL TIEMPO.