After suffering a lot of pain and even receiving an incorrect diagnosis, journalist Mariana Felipe de Oliveira, aged 29, finally discovered, at the beginning of this year, the disease that was afflicting her: ankylosing spondylitis. With a strange name, the disease is a type of rheumatism that causes inflammation mainly in the spine and sacroiliac joints (located in the buttocks region).
“I didn’t have serious limitations because I discovered a lot at the beginning. When I started to feel the pain I went to the orthopedist, who didn’t give me the correct diagnosis. Later, from another doctor, I discovered that it could be an autoimmune disease due to inflammation in the sacroiliac joint, which is a joint near the coccyx. He explained to me that this inflammation was very characteristic of a type of autoimmune disease that is ankylosing spondylitis. And then yes, I looked for a rheumatologist, took the tests and was diagnosed”, he told Agência Brasil, during the National Meeting of Rheumatic Patients, which took place within the Brazilian Congress of Rheumatology. This year, the Congress takes place in Goiânia (GO).
As a symptom of her illness, Mariana feels very severe pain in her lower back, which tends to worsen when she is at rest. “If I’m moving, I practically don’t feel anything, but when I’m at rest the pain gets worse,” she said.
Mariana’s disease is just one of more than 100 existing types of rheumatic diseases, which affect more than 15 million Brazilians, according to estimates by the Brazilian Society of Rheumatology. Rheumatic diseases affect the locomotor system, that is, bones, joints, cartilage, muscles, tendons and ligaments. Some of these diseases can also affect other parts of the human body such as the kidneys, heart and lungs.
“Rheumatic diseases are autoimmune diseases, those pathologies in which the organism itself becomes incompatible with or does not recognize its own cells”, explained Marco Antônio Araújo da Rocha Loures, president of the Brazilian Society of Rheumatology. “Normally the antibody is for you to fight viruses, bacteria and fungi. But if you have this fight [com o próprio organismo], you have an inflammatory process. Whatever the organ, regardless of this reaction, it has a greater or lesser intensity injury, depending on this response.”
Among the most common rheumatic diseases are osteoarthritis [mais conhecida como artrose], fibromyalgia, osteoporosis, gout, tendonitis, bursitis and rheumatoid arthritis. According to doctor Rafael Navarrete, president of the Brazilian Congress of Rheumatology, the most common rheumatic disease is osteoarthritis. “Fibromyalgia and some inflammatory diseases, such as low back pain, are also reaching a very high incidence, which is the second reason for seeking doctors in the world, second only to headache.”
According to rheumatologist Camila Guimarães, president of the Goiana Society of Rheumatology, the diagnosis of most rheumatological diseases is made clinically. “We need a good physical examination for the disease to be diagnosed. Of course, we rely on laboratory tests and radiographic exams, but these are complementary exams. There is no single test that can diagnose rheumatological diseases.”
In general, people tend to think that rheumatic diseases only occur in the elderly, but Mariana is an example that they can also affect younger people.
“It is important to highlight that rheumatic diseases do not only affect elderly people, but of any age group”, highlighted Navarrete.
Importance of early diagnosis
According to rheumatologist Nilzio Antonio da Silva, people usually seek out a rheumatologist only when they feel pain. “Most of the time, a person goes to a rheumatologist with pain in the locomotor system, that is, joint pain, muscle pain or back pain,” he said. But there are other symptoms characteristic of rheumatic diseases, such as skin changes or eye inflammation.
There are also rheumatic diseases that can progress silently, such as osteoporosis. And, if there is a delay in diagnosis, treatment for the disease may be compromised. Therefore, it is important to see a doctor as soon as possible. “The sooner we diagnose, the sooner we intervene and change the evolution of the disease. Therefore, if you have any skeletal muscle symptoms, it is important to see a rheumatologist”, said rheumatologist José Eduardo Martinez, who is part of the Committee on Pain, Fibromyalgia and Other Painful Soft Tissue Syndromes of the Brazilian Society of Rheumatology.
Mariana, for example, was able to obtain a quick diagnosis of her illness, which allowed treatment at an early stage. “I didn’t have physical limitations, although many people do. As diagnosis takes a long time, between 8 and 10 years – and this is a progressive disease – many people find out that it is already at an advanced stage. But as I discovered early on, I didn’t have any physical limitations, but I do have stress limitations from dealing with chronic pain, since everything I do during the day, I’m feeling pain. The brain is working there and, in addition to helping you with what you are doing, it is also constantly reminding you that you have this pain. So it’s a lot of stress.”
“I have time to eat, to go to therapy, to go to physiotherapy and this ends up hurting us a little in our relationships. I also can’t wear the shoes I used to wear anymore. I need to wear more comfortable shoes. I can’t sit for long anymore, but I work sitting all day. So these are some limitations that were placed on my daily life that end up harming me a little, but I am aware that, because I was diagnosed early, I did not develop other limitations that could harm me. [ainda mais]”, added Mariana.
According to Ivanio Alves Pereira, scientific director of the Brazilian Society of Rheumatology, treatments for rheumatic diseases available today can greatly increase the patient’s quality of life.
“Today we live in a time where some intelligent treatments block what is occurring abnormally. And then a series of opportunities appeared, such as biological medicines that have several targets for the disease. So, diseases that until recently generated irreversible deformities or definitive disability such as rheumatoid arthritis or arthritis from other causes such as psoriasis and lupus, today you have a series of new treatments, he said, adding that “patients with rheumatic diseases have the opportunity to not just having an early diagnosis, but having access to treatments today that are very effective and that have changed the quality of life, increased the longevity and survival of this patient.”
And, in general, these treatments are available in the Unified Health System (SUS). “The treatment of my disease, as well as many other rheumatic diseases, is through the SUS. This is an advance in the last 20 years”, said patient Mariana.
Its treatment difficulty, however, refers to complementary treatments such as physiotherapy, RPG and nutritional monitoring. “These are therapies that are not available to everyone, they are not accessible to everyone, unfortunately. And they are very necessary for pain control and stress control and mental health. I couldn’t even get it through the health plan.”
This week, Congress approved a bill that regulates the treatment of fibromyalgia and chronic fatigue by the SUS. If sanctioned, it will legally establish the right for people with these diseases to receive comprehensive care through the SUS, which would include multidisciplinary treatment in the areas of medicine, psychology and physiotherapy and access to complementary exams and recognized therapies, including physiotherapy and physical activity. . These services, reported Agência Senado, are already provided for in a 2012 Ministry of Health ordinance.
When contacted by Agência Brasil, the Ministry of Health has not yet commented on the treatments available in the SUS for rheumatic diseases nor on the difficulty in obtaining complementary treatments for these diseases.
*The reporter traveled at the invitation of the Brazilian Society of Rheumatology
Editing: Valéria Aguiar
By Elaine Patricia Cruz – Special envoy – Goiânia
