Systemic lupus erythematosus affects many organs and systems, therefore patients with this disease require specialized and comprehensive medical care. Unfortunately, lupus patients in Poland often cannot count on it – doctors and patients say.
They talked about it on Wednesday at a press meeting in Warsaw. They also emphasized that this situation could be easily changed. It is enough to coordinate the treatment process.
As prof. Piotr Wiland, president of the Polish Society of Rheumatology, systemic lupus erythematosus is an autoimmune disease that most often affects young women aged 20-40 (women constitute 80-90% of patients). In Poland, the number of people suffering from lupus is estimated at approx. 20.
It is one of the most severe chronic diseases. It can involve many organs and systems – most often the musculoskeletal system, skin, kidneys, heart, nervous, respiratory and hematopoietic systems, mentioned Prof. Wiland.
In most patients, changes begin with the joints – 90% complain of their pains. sick. In 85 percent there are skin lesions (including the characteristic erythema of the face resembling a butterfly in the shape of a butterfly). Changes in the kidneys are found in 70 percent. patients and are associated with more severe disease, as are changes in the central nervous system. General symptoms such as fatigue, fever, enlarged lymph nodes, spleen enlargement, and hair loss are also common.
As noted by prof. Maria Majdan, head of the Department and Clinic of Rheumatology and Systemic Diseases of Connective Tissue, Medical University of Lublin, in order for lupus to be treated effectively and to achieve disease remission (i.e. withdrawal of its symptoms – PAP), it should be diagnosed properly and as soon as possible.
The difficulty is that it is a very diverse and relatively rare disease, and with ailments such as joint pain, skin changes, fatigue, the patient most often goes to the primary care physician (POZ), the rheumatologist noted. Therefore, these doctors need to know what the initial symptoms of lupus are and what to do to help the patient. In order to facilitate the education of GPs in this area, rheumatologists, together with patients and a psychologist, have prepared a report entitled “Systemic lupus erythematosus in Poland”. It was presented for the first time on Wednesday at a press conference.
According to prof. Maidan, systemic lupus is classified as a rheumatic disease, therefore its final diagnosis should be made in a rheumatological center by an experienced physician. “It should be done by a rheumatologist who has seen various forms of lupus, who knows how to differentiate them and will propose long-term treatment taking into account the form and activity of the disease, as well as the patient’s life situation, eg maternal plans in the case of a woman” – said Prof. Maidan.
She emphasized that the rheumatologist should also coordinate and supervise the entire therapy of a lupus patient. “Of course, in cooperation with doctors of various specialties, depending on the dominant organ changes” – she added. In her opinion, a patient should not go from a dermatologist to a nephrologist, a neurologist, and then to a cardiologist and pulmonologist. “He must have a doctor who knows the whole disease, and such a doctor is a rheumatologist,” she said. During remission, the patient may be under the care of a primary care physician.
Unfortunately, in Poland, patients with systemic lupus often do not have a physician coordinating specialist treatment. Ms Marta Kotarba-Kańczugowska, in whom the diagnosis of lupus was confirmed last year, still wanders among doctors of various specialties, such as rheumatologist, nephrologist, dermatologist. And because he suffers from another autoimmune disease – myasthenia gravis, he must additionally be under the care of a neurologist. “Some of the therapeutic recommendations proposed by the doctors are ruled out – a rheumatologist proposes a treatment that a neurologist does not agree to, and a dermatologist proposes a treatment that a nephrologist does not agree to,” she said.
In her opinion, it is a very difficult and burdensome situation for a person who is struggling with a chronic disease. “It would be a miracle if lupus patients could heal in one place,” she admitted.
According to Dr. Jerzy Gryglewicz, an expert in the field of health care, who is associated with the Lazarski University in Warsaw, in Poland it is possible to create such comprehensive specialist care for patients with systemic lupus. Two years of the National Health Fund team has created benefits that make it possible. Currently, such a model is used in the case of patients with AIDS and diabetes (there are 47 highly specialized diabetes clinics throughout the country, with which the National Health Fund concludes a contract for comprehensive care over patients). Dr. Gryglewicz developed a similar concept for patients with lupus. At the Wednesday meeting, he expressed the hope that it would meet with a favorable attitude from the National Health Fund, especially as it enables the fund to use funds effectively. (PAP)
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