“I’m not producing tears or saliva, I can’t cry”: woman living with rare Sjogren’s syndrome

In 2008, while pregnant with her second child, Rafaela Santana Oliveira Silva, a now 42-year-old nursing student, began experiencing symptoms such as hair loss, body itching, fatigue, and dry eyes and mouth.

However, this Brazilian woman focused on caring for her newborn son and put medical care aside. Four years later, Instead of improving, Rafaela noticed that her symptoms were getting worseAnd began looking for a diagnosis.

It’s eight years and dozens of dates With very different specialists: dentist, ophthalmologist, dermatologist and neurologist. No one has come to a consensus.

“As time went on, my symptoms got worse. She no longer produced tears or saliva, so she couldn’t cry, and she had to drink liquids at the same time as eating. I started having severe pain in my joints and constant fatigue, which prevented me from doing anything, even everyday activities,” said He describes.

At that time, due to severe pain, Rafaela’s mobility was reduced and the pain prevented her from leaving the house. “I was diagnosed Fibromyalgia, but not only that, he also knew 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 when she went from doctor to doctor in search of a diagnosis, she thought she had mental health problems, because she often heard from people and from the same experts that “it’s impossible for her to be in pain.” They said.

“I felt pain all over my body and was told that it was not possible. I thought I was going crazy, the pain was not real but psychological“, remember. He also sought psychological help to cope with the situation.

During a consultation with a general practitioner in late 2019, Rafaela was diagnosed with Sjögren’s syndrome, a rare disease that affects dry skin, eyes and mouth and other body systems.

“They referred me to a rheumatologist, who asked me for a series of tests. Six months later the diagnosis came: he had Sjogren’s syndrome. I’ve never heard of it, I don’t know what it is,” he says.

Sharing experiences and confronting prejudices

The diagnosis brought relief, but also fear. Rafaela admits that in addition to having to deal with the daily pain of the disease, she also had to face people’s prejudices. “Many see, because I have no physical symptoms of the disease, because it is ‘invisible’, they doubt that it really exists. People don’t understand My fatigue and my body aches. I had to show the medical certificate for them to believe me,” he says.

To understand more about the disease, she began researching content that could help her adapt to her new life at this stage. He later created an Instagram page where he talks about the disease and shares his experience.

“A doctor speaks and a sick person speaks differently. That’s why I try to show a little of my life and talk a lot with other people with the syndrome. We support each other“, he says.

There is no cure for Sjögren’s syndrome. And treatment is carried out by a multidisciplinary team that includes rheumatologists, ophthalmologists and dentists. To relieve symptoms of dry skin, eyes, and mouth, use corticosteroids, immunosuppressants, and following a healthy diet, avoiding very dry foods, and using specific products to stimulate saliva daily.

“It is a new life because the drugs cause many side effects. One day you’re fine, the next you’re too tired to get out of bed. It is a daily struggle,” he says.

What is Sjögren’s syndrome?

Sjögren’s syndrome, also known as dry mucosa syndrome, is a rare, chronic, and autoimmune disease characterized by dry eyes and mouth. In the presence of symptoms of glandular inflammation.

The Lymphocytes (white blood cells) invade certain organs and glands, especially the tear and salivary glands, creating an inflammatory process that reduces their normal function. Sufferers also have skin, nasal and genital symptoms, fatigue, joint pain and arthritis.

“A person has dryness, irritation, itching, redness, burning and gritty feeling in the eyes.. There may be difficulty opening the eyes in the morning, blurred vision, and discomfort when reading, watching television, or spending too much time in front of the computer. Environmental factors such as wind, fans, air conditioning and low humidity worsen the condition”, explains Kayla Monteiro de Carvalho, professor of ophthalmology at the School of Medicine of the State University of Campinas, near São Paulo.

Other parts of the body can also be affected Kidneys, lungs, liver, pancreas and central nervous system. The appearance of Sjögren’s syndrome is very common Women between 40 and 50 years of age, And the ratio of females to males affected is 9 to 1.

What causes Sjögren’s syndrome and why it only appears in adolescence is still unknown. Experts believe that it is caused by the disease Three main factors: genetic, environmental and hormonal (This explains the higher frequency of the syndrome in women).

Diagnosis and treatment

There is no single test that defines the diagnosis of Sjögren’s syndrome. To diagnose the disease, the doctor considers a set of characteristics Such as symptoms, changes in clinical examination, tests performed by an ophthalmologist, results of laboratory and imaging tests, and biopsy results of small salivary glands located on the inside of the lower lip.

No diagnosis and no treatment Treatment varies A multidisciplinary follow-up is required according to the presenting symptoms of each patient.

“The disease has a very diverse clinical picture. Some patients exhibit only symptoms of dryness, while others have severe organic involvement such as neuropathy”, explains Sandra Gofinet Pasoto, coordinator of the Sjögren’s Syndrome Commission of the Brazilian Society of Rheumatology.

Some common measures help reduce dryness of the mucous membranes: avoid dry environments, use humidifiers; Some of them include protecting the eyes from sunlight and wind by wearing glasses, not wearing contact lenses, drinking enough fluids, using moisturizing creams on the skin and lips, and not smoking.

“In relation to systemic compromise, glucocorticoids, immunosuppressive drugs and some biological agents may be used.”, adds Basodo.

In addition, according to experts, it A change in habits is requiredSuch as avoiding sweets, not using alcohol or perfumed soaps, staying in air-conditioned or windy places and not using devices with screens such as computers and cell phones for long periods of time.

“Sjögren’s syndrome requires attention because it can induce other comorbidities such as pulmonary involvement, renal manifestations, peripheral nervous system, and central nervous system involvement. Other manifestations are more characteristic, such as cephalia (headache), cognitive dysfunction and altered mood,” explains rheumatologist Marco Antonio Arajo da Rocha Lures, president of the Brazilian Society of Rheumatology.

He added that Hematological manifestations are characterized by anemia and reduced immunity As leukocytes decrease, cardiac manifestations such as pericarditis, valvular damage, myocarditis, and arrhythmias may occur. This syndrome can also lead to pulmonary hypertension.

BBC World