Disease prevents woman from producing tears – 03/15/2023 – Equilibrium

It was in 2008, during the pregnancy of her second child, that nursing student Rafaela Santana Oliveira Silva, now 42 years old, started having symptoms such as hair loss, body itching, fatigue and feeling dry eyes and mouth. However, the woman, who lives in Salvador (BA), ended up dedicating herself to caring for her newborn child and left health care aside.

Four years later, Rafaela noticed that the symptoms, instead of getting better, were getting worse and she began to seek a diagnosis. It took eight years and dozens of consultations with the most varied specialists – dentist, ophthalmologist, dermatologist and even neurologist. Nobody reached a consensus.

“As time went by, my symptoms only got worse. I no longer produced tears or saliva, so I couldn’t cry and to eat I had to drink liquids together. I started to have very strong pain in my joints and constant fatigue that prevented me from doing anything. simple day-to-day activities”, details Rafaela.

At that time, due to the intense pain, the student says that she had reduced mobility and moved around with difficulty. The pain made her avoid leaving the house.

“I was diagnosed with fibromyalgia, but I knew it wasn’t just that. That I had some other illness. I was also diagnosed with lupus, but the doctors were wrong”, she recalls.

‘I thought I was crazy’

Rafaela says that while she was going from doctor to doctor, in search of a diagnosis, she came to think that she had psychiatric problems, since many times she heard from people and the professionals themselves that “it was not possible for her to be in as much pain” as she said.

“I felt pain all over my body and they said so much that it wasn’t possible, I thought I was going crazy. That the pain wasn’t real but psychological”, she recalls. She also sought psychological help to deal with the situation.

It was during a consultation with a general practitioner, at the end of 2019, that Rafaela was hypothesized to have Sjögren’s syndrome – a rare disease that causes dry skin, eyes and mouth, in addition to affecting other body systems.

“I was referred to the rheumatologist and he asked me for a battery of tests. Six months later came the diagnosis: I had Sjögren’s syndrome. I had never heard of it and had no idea what it was”, says the student.

Sharing experience and facing prejudice

The diagnosis brought relief, but also fear. In addition to having to deal with the daily pain caused by the disease, Rafaela claims that she had to face people’s prejudice.

“Many people look and because 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 fatigue and body aches. I already had to show the medical certificate for them to believe “, reports.

To understand more about the disease, the student began to research content that could help her in this phase of adaptation to her new life. She created an Instagram page where she talks about the disease and shares her experience.

“It’s different for a doctor to speak and a person with the disease to speak. 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”, he says.

There is no cure for Sjögren’s syndrome and treatment is carried out with a multidisciplinary team that includes a rheumatologist, ophthalmologist and dentist.

To ease the symptoms of dry skin, eyes and mouth, she uses specific products such as: xylitol-based mouthwash to stimulate salivation, use of specific eye drops daily, in addition to taking corticoids, immunosuppressants and following a healthy diet, avoiding too much food. dry.

“It’s a new life, because the medications cause many side effects. One day you’re fine and the next you’re so tired that you can’t get out of bed. It’s a daily struggle”, says the student.

What is Sjögren’s Syndrome

According to the Brazilian Society of Rheumatology, Sjögren’s syndrome, also known as dry syndrome, is a rare, chronic and autoimmune disease whose main characteristic is eye and mouth dryness associated with the presence of signs of glandular inflammation.

Lymphocytes (white cells) invade some organs and glands, especially the lacrimal and salivary ones, generating an inflammatory process that impairs their normal functioning. Patients with the disease also have dry skin, nose and vagina, fatigue, arthralgias and arthritis.

“The person has a feeling of dryness, irritation, itching, redness, burning and a feeling of sand in the eyes. There may also be difficulty opening the eyes in the morning, blurred vision and discomfort when reading, watching TV or staying for a long 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 FCM/Unicamp.

In addition, other organs in the body such as the kidneys, lungs, liver, pancreas and central nervous system can also be affected. The appearance of Sjögren’s syndrome is more common in women between 40 and 50 years old and the proportion of women and men affected is about 9 to 1.

It is still not known what causes Sjögren’s syndrome and why it only manifests itself in adulthood. According to experts, it is believed that the disease develops due to three main factors: genetic, environmental and hormonal (which would explain the higher frequency of the syndrome in women).

Diagnosis and treatment

There is no test that alone 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, the results of laboratory and imaging tests, such as ultrasound of the salivary glands, and the result from 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, requiring multidisciplinary follow-up.

“The disease has a very variable clinical picture. Some patients only have symptoms of dryness, while others have serious organic involvement, such as, for example, the neurological one.

Some general measures help reduce dryness of the mucous membranes: avoid dry environments, use humidifiers; protecting the eyes from sunlight and wind by wearing glasses, not wearing contact lenses, ingesting liquids properly, using moisturizing creams on the skin and lips and not smoking, are some of them.

As for systemic involvement, glucocorticoids, immunosuppressants and some biological agents can be used”, explains Sandra Gofinet Pasoto, assistant physician at the Rheumatology Service, Hospital das Clínicas, Faculdade de Medicina da USP (HCFMUSP) and coordinator of the Syndrome Committee by Sjögren of the Brazilian Society of Rheumatology.

In addition, according to specialists, a change in habits is necessary, such as avoiding the consumption of sweets, using soaps without alcohol or perfumes, avoiding staying in environments with air conditioning or wind, not using devices with screens – such as computers and cell phones – for extended time, for example.

“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 headache (headache), cognitive dysfunction and mood disturbance, are very Hematological manifestations are characterized by anemia and low defense due to the decrease in leukocytes. Pericarditis, valve damage, myocarditis and arrhythmias can be cardiac manifestations. Pulmonary hypertension occurs”, explains rheumatologist Marco Antônio Araújo da Rocha Loures, president of the Brazilian Society of Rheumatology.