Lupus is an autoimmune disease: the immune system itself attacks healthy cells and tissues by mistake. It has no cure. However, treatments have evolved considerably in recent years and a door to hope is opened to more than 82,000 people in Spain and 5 million worldwide who suffer from this pathology with a thousand faces, mostly women between the ages of 15 and 55. .
An example of scientific advances: “Beyond classic treatments, there are currently biological treatments indicated for certain manifestations of the disease, such as rituximab, belimumab or anifrolumab,” explains Beatriz Arca, a rheumatologist at the San Agustín University Hospital (Avilés). , who recently participated in the 23rd Congress of the Asturian Rheumatology Society. This medical meeting featured a presentation by a national reference in the study and treatment of lupus, Dr. José María Pego Reigosa, specialist at the Vigo University Hospital Complex and Coordinator of the IRIDIS Group (Research in Rheumatology and Immune Mediated Diseases), who put highlights the well-founded expectations of a remission of the disease and a substantial improvement in the quality of life of patients. He adds the Avilesina specialist: “After a few years of research on different drugs without great success, trials are currently underway with new molecules that seem promising.”
Two Corverana women, Pilar Suárez, from Trasona, and María López, from Cancienes, know what it is like to live with lupus and the long list of associated diseases. Because there are multiple organs and systems that are injured in lupus: skin, joints, kidneys, nervous system… Both belong to the Lúpicos de Asturias Association, a group that will celebrate its silver wedding anniversary on December 28, 25 years giving “wings”. The group was created with the aim of informing, raising awareness, guiding, stimulating research and promoting comprehensive and interdisciplinary care to improve the quality of life of those affected and their families.
María López is 47 years old and does not know a life without pain. “As a child, sometimes she was left without going out,” she recalls. So, those pains, today in the back, tomorrow in the shoulders, had no name. Her pregnancy marked a before and after: “I felt like I was dying of exhaustion,” she says. Her father then had just suffered from myeloma, a type of cancer that forms due to the presence of malignant plasma cells.
“They did tests on me and that’s how lupus, my life partner, appeared. So I looked in an encyclopedia for what it was and, according to that, I had a life sentence,” he says. She now follows a treatment, like Pilar Suárez, who also suffers from scleroderma (a chronic and autoimmune rheumatic disease that usually affects the skin), based on cortisone. She is also undergoing a biological treatment that, she assures, is useful for her. And the entire cocktail seasoned with many other drugs, because López is fighting uterine cancer, she suffers from migraines, lupus nephritis, chronic fatigue… She is now on sick leave. But María López worked as she could and as a freelancer, in front of a kiosk, until her body said enough was enough.
“In showering I spend half my energy,” he admits. For María López getting up sometimes is a triumph; other times, she makes plans because she is feeling better, but then she has to park them as she goes. Her medication is doing well, but she is aware that, for the moment, lupus is a disease with a thousand faces and no cures. “What they give us is to alleviate, to stop the outbreaks,” points out this woman who cries today and gets up again tomorrow “because she has nothing left but to fight.”
Pilar Suárez, now 57 years old, started at a very young age “with fevers and a kind of mumps.” “Over time, in 1981, I was diagnosed with lupus and scleroderma. Scleroderma attacks me more, but even so I make bobbin lace, I don’t know how, but it’s my escape.” Suárez regrets having lost her childhood and her youth in hospitals. She thanks her mother, first, and her husband, now, for the unconditional support received in all these years.
“What offends me the most is that with this bad disease you have no right to anything. I could not bathe my daughter or bathe myself, I asked for social assistance, and they told me that this was for the elderly,” he stresses. Now Pilar Suárez, who was able to work for a short time, first in a video store and then as a product stewardess in a supermarket, has limitations, but she does not hesitate to pamper a grandson who does not care that his grandmother’s hands are cold as a iceberg.
Both Pilar Suárez and María López value public health. “If we had to pay for the treatments we have and the tests they do, we would be dead a long time ago.” They admit to always carrying “a backpack full of constant pain”, being “fear of organ involvement” and suffering every day when night falls: “Will we wake up?” His is “live to keep fighting.”
The Asociación Lúpicos de Asturias has special relevance in their day-to-day lives, which is summarized in the acronym “Wings”, of great significance for these patients who are much braver than Little Red Riding Hood with her wolf when they fight against their own lupus. His hope is called research, and his wish, cure.