It was in 2008, while pregnant with her second child, that nursing student Rafaela Santana Oliveira Silva, now 42, began to experience symptoms such as hair loss, itchy body, fatigue, and a feeling of dry eyes and mouth.
However, this Brazilian woman focused on caring for her newborn son and put aside seeking medical attention. Four years later, Rafaela noticed that her symptoms, instead of improving, were getting worseand began to search for a diagnosis.
It was eight years and dozens of dates with the most varied specialists: dentist, ophthalmologist, dermatologist and even neurologist. No one reached a consensus.
“As time went by, my symptoms only got worse. She no longer produced tears or saliva, so she couldn’t cry and to eat she had to drink fluids at the same time. I began to have very severe pain in my joints and a constant tiredness that prevented me from doing anything, even simple day-to-day activities, ”she details.
At that time, due to the intense pain, Rafaela had reduced mobility and the pain prevented her from leaving her home. “I was diagnosed fibromyalgia, but he knew that it was not only that, that he had another disease. I was also diagnosed with lupus, but the doctors were wrong, ”she recalls.
“I thought I was crazy”
Rafaela says that while she went from doctor to doctor in search of a diagnosis, she came to think that she had psychiatric problems, since she often heard from people and from the same professionals that “it was not possible that she was in as much pain” as they said.
“I felt pain throughout my body and they said that so much was not possible. I thought I was going crazy, that the pain was not real but psychological“, remember. She also sought psychological help to deal with the situation.
During a consultation with a general practitioner in late 2019, it was hypothesized that Rafaela had Sjögren’s syndrome, a rare disease that causes dry skin, eyes and mouth, as well as affecting other body systems.
“They referred me to the rheumatologist, who asked me for a series of tests. At six months the diagnosis came: he had the Sjögren’s syndrome. I had never heard of it and had no idea what it was,” she says.
Sharing experiences and confronting prejudices
The diagnosis brought relief, but also fear. In addition to having to deal with the daily pain caused by the disease, Rafaela assures that she had to face people’s prejudices. “Many people look and since I don’t have a physical sign of the disease, because it is ‘invisible’, they doubt that it really exists. people don’t understand my tiredness and my body pains. I had to show the medical certificate for them to believe me, ”she recounts.
To understand more about the disease, she began to research content that could help her in this phase of adaptation to her new life. He then created an Instagram page where he talks about the disease and shares his experience.
“It is different whether a doctor speaks or a person with the disease speaks. That’s why I try to show a little of my life and talk a lot with other people who also have the syndrome. we support each other”, dice.
There is no cure for Sjögren’s syndrome. and the treatment is carried out by a multidisciplinary team that includes rheumatologists, ophthalmologists and dentists. To alleviate the symptoms of dry skin, eyes and mouth, use specific products to stimulate salivation and specific eye drops daily, in addition to taking corticosteroids, immunosuppressants and following a healthy diet, avoiding very dry foods.
“It’s a new life, because the drugs cause many side effects. One day you’re fine and the next you’re so tired you can’t get out of bed. It’s a daily struggle,” she says.
What is Sjögren’s syndrome?
Sjögren’s syndrome, also known as dry mucosa syndrome, is a rare, chronic and autoimmune disease whose main characteristic is associated dry eyes and mouth. to the presence of signs of glandular inflammation.
Los lymphocytes (white blood cells) invade some organs and glands, especially the tear and salivary glands, and generate an inflammatory process that impairs their normal functioning. Patients with this disease also have dry skin, nose and vagina, fatigue, joint pain and arthritis.
“The person has a sensation of dryness, irritation, itching, redness, burning and a sensation of sand in the eyes. There may also be difficulty opening the eyes in the morning, blurred vision, and discomfort when reading, watching television, or spending a lot of time in front of the computer. Environmental factors such as wind, fans, air conditioning and low humidity aggravate the situation”, explains Keila Monteiro de Carvalho, professor of ophthalmology at the School of Medicine of the State University of Campinas, near São Paulo.
Other organs of the body may also be affected, such as the kidneys, lungs, liver, pancreas, and central nervous system. The appearance of Sjögren’s syndrome is more common in women between 40 and 50 years old, and the ratio of women to men affected is 9 to 1.
It is not yet known what causes Sjögren’s syndrome and why it only manifests itself in adulthood. Experts believe that the disease develops due to three main factors: genetic, environmental and hormonal (which would explain the greater frequency of the syndrome in women).
Diagnosis and treatment
There is no single test that defines the diagnosis of Sjögren’s syndrome. For the diagnosis of the disease, the doctor considers a set of characteristics such as symptoms, changes in the clinical examination, examinations performed by an ophthalmologist, results of laboratory and imaging tests, and the result of a biopsy of the small salivary glands located on the inside of the lower lip.
There is no cure for the syndrome and treatment varies according to the symptoms presented by each patient, which requires a multidisciplinary follow-up.
“The disease has a highly variable clinical picture. Some patients only present symptoms of dryness, while others have severe organic involvement, such as neurological”, explains Sandra Gofinet Pasoto, coordinator of the Sjögren’s Syndrome Commission of the Brazilian Society of Rheumatology.
Some general measures help to reduce the dryness of the mucous membranes: avoid dry environments, use humidifiers; protecting the eyes from sunlight and wind by wearing glasses, not wearing contact lenses, drinking adequate fluids, using moisturizing creams on the skin and lips, and not smoking are some of them.
“Regarding systemic compromise, glucocorticoids, immunosuppressants and some biological agents can be used.”, adds Pasoto.
In addition, according to specialists, it is need a change of habitssuch as avoiding the consumption of sweets, not using soaps with alcohol or perfumes, avoiding staying in air-conditioned or windy places, and not using devices with screens -such as computers and cell phones- for a long time.
“Sjögren’s syndrome requires attention because it can trigger other comorbidities such as pulmonary involvement, renal manifestations, peripheral nervous system, and central nervous system. Other manifestations, such as cephalea (headache), cognitive dysfunction and altered mood, are very characteristic”, explains rheumatologist Marco Antônio Araújo da Rocha Loures, president of the Brazilian Society of Rheumatology.
He added that the hematological manifestations are characterized by anemia and low defenses due to the decrease in leukocytes, and that there may be cardiac manifestations such as pericarditis, valvular damage, myocarditis and arrhythmia. The syndrome can also lead to pulmonary hypertension.