“Despite the destructive nature of the disease, little by little I became friends with my “wolf””

Like Alicia, Sylvia suffered greatly from the disease without even knowing it. When he was 25 years old, he went through various doctors and received diagnoses such as sun allergies, hypochondria, a personality disorder, or even heard that he wanted to “get attention.” Finally, he was able to give his illness a name and surname, although no one explained to him what emotional damage this diagnosis produces in the mind from the loss of health. Between various phases of grief and acceptance, it took more than 15 years to calm the “wolf.” “Despite the devastating nature of the disease, little by little I became friends with it,” says Silvia, now 47 and current president of the Spanish Lupus Federation (Felupus).

90% of cases occur in women

Lupus is a chronic autoimmune pathology in which the body’s defense mechanisms attack themselves. This leads to the formation of excess antibodies in the blood, which causes inflammation and damage to joints, muscles and other organs.

It is estimated that it currently affects more than 82,000 people in Spain and 5 million worldwide, 90% of whom are women aged 15 to 44 years. Worst: No two cases are the same. Because of this, every patient, every story and every pain is completely different from each other. In addition to the fact that lupus can have many different manifestations, it can often take years for a diagnosis to be made.

Although lupus is one of the most common autoimmune diseases, almost 60% of Spaniards do not know what it is and more than 80% of the mortality that this pathology can entail, according to Felupus.

In this regard, and on the occasion of World Lupus Day, May 10, Felupus, AstraZeneca and the Spanish Society of Rheumatology have launched an information campaign with a photo essay that will be exhibited at the Congress of Deputies from the 14th to the 18th. . this month. In addition to the exhibition, the initiative will invite the public to use an Instagram filter that mimics analogue development, with the aim of increasing public awareness of the pathology.

Jessica’s story with systemic lupus erythematosus began in 2014, when she was 22 years old and attending university. The changes in her life were so drastic that she was never able to pursue her dream profession due to fear of an outbreak, since it involved working in the field, and one of the main recommendations for lupus patients is not to expose themselves to the sun.

Added to this was subacute cutaneous lupus after a severe skin outbreak and loss of some hair. “The disease affects almost the entire personal and social sphere of his life,” he laments. You will now have to treat not only the rashes, but also the loss of memory, self-esteem and happiness.

He had to give up one of his pleasures—sunbathing—and learn to live “in the dark.” “I have days when I don’t feel like I can do anything at all,” he comments, adding that over time he realized that “it’s okay if I have to cancel plans, I didn’t need to.” do this.” torment yourself. Even if this is not the case, I also want to enjoy life. For example, she now accepts spots caused by lupus without any qualms. “They are the result of my experience. Even when they are hidden under my clothes, they remind me how strong I am.

Noah was diagnosed at age 15 after experiencing severe headaches, fainting, severe anemia and weight loss. As a result of the disease, her life has been limited due to outbreaks that determine her social outings and leisure plans, as well as due to the various subpathologies from which she suffers, since due to suppressed immunity her health is very vulnerable and she is exposed to all types of viral and bacterial infections. “When it comes, it’s like a hurricane,” he says.

Lupus can remain quiet for a long time. However, because it is autoimmune, it is activated when the defense system, destabilized by stress, sun exposure, infection or other trigger, makes a mistake and attacks its own cells, causing inflammation of organs and joints.

Butterfly, red rash in the shape of a mask.

Sometimes years pass and it is only when the butterfly appears, its most typical sign being a red, mask-like rash around the cheeks and nose, usually after exposure to the sun, that suspicions are confirmed. Corticosteroids are usually prescribed for inflammation, and immunosuppressants are used to weaken defenses while the body reduces its defenses against other enemies.

But in some cases the diagnosis can be fatal. This is the case, for example, with singer Selena Gomez, who suffers from lupus nephritis, one of the most serious manifestations of lupus. Years ago, it caused kidney failure and she had to retire from public life for a long time because her life was in danger.

Diagnostics

As for how to diagnose, Felupus explains that doctors have to gather information from multiple sources: medical history, laboratory tests and current symptoms. They use a list of 11 criteria to help make a diagnosis. To be diagnosed, a patient must meet four of all criteria. Some may have greater diagnostic value, such as a kidney biopsy. Of these criteria, seven are related to symptoms and four are related to laboratory tests.

The causes of lupus can be genetic, hormonal, or even environmental. Maria Galindo, rheumatologist at the Doce de Octubre University Hospital in Madrid, explains in detail that the most difficult thing is to make an early diagnosis, and for this you should always have a suspicion of possible kidney damage, since it can affect 40% of patients with lupus,” says the German

At the moment, a cure is still far from being found. However, clinical trials have shown that CAR-T cell therapy is effective in treating lupus. Now the authors of the paper note that it is premature to say whether the patients in the study were actually cured of the autoimmune disease, but “they at least appear to be able to achieve sustained remission of the disease without drugs.”