He systemic lupus erythematosus (SLE) is one that affects more than 5 million people in the world. Most of them are women who face an uncertain future and struggle every day with the disabling consequences it has on their health.
Today, like every May 10, its World Day is celebrated, which seeks to raise awareness about an unknown ailment that has important repercussions on the lives of patients and about which there is still much to investigate.
“There is a wolf among us”
And to achieve this social awareness, rheumatologists, patients and the British pharmaceutical company GSK (GlaxoSmithKline) have presented
the short film “There is a wolf among us”.
A video in which, in less than 2 minutes, they bring us closer to the reality of lupus, a disease that, as the president of the Spanish Federation of Lupus (FELUPUS) says, “is like a stealthy wolf, which is lurking and when The least you expect is the outbreak.
The short film tries to make visible both lupus disease in general and lupus nephritis, which is one of its most serious and frequent complications. And in a very short time, it manages to make visible the needs of people living with the disease.
Sivia Pérez, president of FELUPUS, assured in the presentation of the video that:
«With this campaign they will be able to see what people with lupus feel. Before the diagnosis, when we received it and after knowing it. In addition, you can see in it the looks we receive. The psychological affect is forgotten, but that period of adaptation is difficult.
More than 80,000 affected in Spain
Lupus disease is characterized by a deregulation of the immune system.
It loses tolerance to its own antigens and recognizes them as foreign, which produces an attack on the different organs and tissues by our antibodies, also known as autoantibodies.
Systemic lupus erythematosus is estimated to affect more than 80,000 people in Spain. We are talking about a disease for which there is currently no cure and of which little is known about its origin, as explained by the doctor José Salvador García Morillocoordinator of the Systemic Autoimmune Diseases Group (GEAS) of the Spanish Society of Internal Medicine (SEMI).
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Although its origin is a strangerit is known that there is an interrelationship between genetic and environmental factors”.
In recent years “an association has been found with certain HLAs such as B8, DR3, DQW2, C4AQ0. In addition to genetic factors, environmental factors such as infections (Epstein-Barr virus) or exposure to xenobiotics (UV light or tobacco) seem to be related to the development of this disease”.
The main antibodies present in SLE are antinuclear antibodies (ANA) that “identify patients at risk of developing or having this disease, and there are others such as anti-DNA antibodies or anti-Sm, which are pathogenic of the disease”.
Which are the lupus signs
The most complicated thing about this disease is the symptoms, since it is very varied. In fact, rarely do two people have the same symptoms of the disease, the diagnosis of which can take years.
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Loss of hair.
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Headache.
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Fatigue, weakness and tiredness.
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Oral or nasal ulcers.
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Butterfly-shaped rash on nose and cheeks.
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Pain in muscles and joints.
How lupus is diagnosed
During the world lupus day, which is celebrated this Wednesday, May 10, it is very important to raise awareness about this disease that affects thousands of people in our country. In recent years, novelties in diagnosis have appeared, as well as new therapies, which aim to control the disease and reduce the side effects of medications.
Doctor García Morillo stresses that this disease is characterized by its “clinical heterogeneity”, which is why it can affect various organs such as the skin, kidneys, lungs, vascular system… Its diagnosis, therefore, “is based on clinical and serological criteria , and it depends a lot on clinical suspicion”.
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“The presence of typical clinical manifestations, especially skin or nephritis (inflammation of kidney tissues), photosensitivity, hair loss in a young woman of childbearing age, guides the diagnosis of SLE.”
The clinical course of lupus is usually chronic, with periods of activity or flare-ups and others of remission, although its complete disappearance is usually “scarce”.
lupus treatment
The prognosis of this autoimmune disease varies, not only due to the severity of the activity in the different organs, but also due to the “accumulated chronic damage derived from the immunosuppressive treatments used, such as hydroxychloroquine, glucocorticoids, methotrexate or cyclophosphamide”.
Hence the importance of developing new biological treatments to avoid the side effects of immunosuppressive drugs “directed against B lymphocytes such as Rituximab or Belimumab, which is the only biological with a specific indication for SLE.”
And the new CAR-T therapies have arrived to selectively treat immune dysregulation, as an alternative treatment in more severe forms that are resistant to immunosuppressants or biologics, as detailed by Dr. García Morillo.
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“The successful clinical application of anti-CD19 CAR-T cells in the treatment of SLE is a breakthrough in the field of SLE. Although issues related to ethics, optimization of application methods and the possibility of wider application have not yet been fully discussed, the success so far opens a new avenue and brings new hope to patients.”
9 out of 10 adults with lupus are women
90% of patients over 18 years of age with this disease in Spain are women. In addition, one in three patients has another immune-mediated disease and almost half had a family history of lupus. As already mentioned, complete remission is rare, despite intensifying treatment, so a situation of low lupus activity must be sought.
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