Sjögren’s syndrome is an autoimmune disease that inflames the glands and prevents the body from producing tears or saliva.
“I don’t remember when was the last time I could cry. I remember when I tried, in 2017, at my father’s funeral. The strong emotion arrived, but not tears“, remembers Rosemary do Carmo, 51. She has the Sjogren’s syndromean untreated autoimmune disease that prevents the glands from producing tears or saliva.
Resident in Aparecida (SP), she was diagnosed with the disease about nine years ago. Two other diseases were also confirmed at the time: non-Hodgkin’s lymphoma and purpura pigmentosa.
“It’s just that when an autoimmune disease comes up, it comes up with other things too, right?” He justifies himself, awkwardly.
Dry mouth was one of the first signs Rosemary’s body gave that something was wrong. She felt the thick, thick tongue that not even drinking water could solve. “There are times when you can’t finish a sentence, your mouth freezes,” she adds.
Noticing dry eyes was crucial for Rosemary to seek medical help. The diagnosis came quickly, after a few tests.
But this agility is not a rule, explains rheumatologist Virgínia Moça Trevisani, who works as the coordinator of the Sjogren’s syndrome at the Brazilian Society of Rheumatology. According to her, patients can stop a six to ten year search for the correct diagnosis of the disease.
This is mainly due to the fact that dry mouth and eyes are a symptom of many other clinical conditions, such as fibromyalgia, hypothyroidism, diabetes, antidepressant medications, and even menopause, for example.
dry syndrome
Also known as dry syndrome, the autoimmune disease primarily affects women – about nine of them for every man diagnosed, according to the rheumatologist. It is a relatively common disease, but little is said about it yet.
In Sjögren’s syndrome, the glands become inflamed and, over time, lose their function. Lack of saliva and tears is the initial symptom of the disease, but several problems arise due to so much dryness.
“In the eyes, the person feels burning, itching, fatigue. He begins to have blurred and burning, red eyes,” says the specialist.
Likewise, saliva is also important for the health of the teeth and mouth.
“When it dries up, the patient begins to have a burning sensation, secondary infections, cheilitis, tooth loss and the appearance of multiple cavities,” he says.
The loss of teeth can occur, according to Trevisani, because saliva is important in the process of mineralization of the teeth. Without saliva, cavities will appear that will weaken these bones, causing them to fall out over time.
In addition to these two regions, the entire skin and the vagina are also dry. “Other systems can also be compromised by the disease,” emphasizes the rheumatologist. This is what happened to Rosemary, who developed non-Hodgkin’s lymphoma, associated with the syndrome, pulmonary and thyroid nodules, and other conditions.
How to diagnose Sjogren’s syndrome
The appearance of Sjögren’s syndrome does not have an exact cause. The genetic factor can facilitate the development of autoimmune diseases, but environmental factors, viral diseases, infections and emotional aspects can cause the manifestation of the disease.
The first step towards diagnosis are eye examinations, to analyze the eye glands. The second step is to undergo a salivary flow test to see how much saliva is being produced. Finally, a biopsy is performed on the salivary gland to attest to the condition.
“There is no cure. What can be done is to control the symptoms with eye lubricants, sunglasses to protect from light, eye packs. In the mouth you need to go to the dentist often and use appropriate products,” he points out. the rheumatologist .Virginia Moça Trevisani.
It also points out that if the patient develops other conditions from the syndrome, systemic medications should be given.
life upside down
Rosemary do Carmo, who has lived with the diagnosis for nine years, summarizes the treatment as “something that turned her life upside down”.
“I spend the day dripping eye drops, I take a lot of medications. My routine is very complicated,” he explains.
She is also obliged to eat with some liquid. “If I don’t have it, my throat closes and it seems like everything will come back, I can’t swallow,” she says.
The woman also suffers from the lack of a high-cost drug offered by the Unified Health System (SUS), the rituximab. The doctor’s recommendation is one dose every six months, but Rosemary hasn’t taken the drug for a year. Each dose costs around R $ 10,000.
“When I take it, it greatly improves my joint pain. It fights inflammation,” explains Rosemary, who travels 200 km to follow the treatment at the Hospital das Clínicas, in Sao Paulo.
the team of Land questioned the health ministry about the lack of the drug in the public system, but the ministry didn’t come out until this report was published. The space remains open.
* With editing by Estela Marques.
Source: Terra
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