Miaasastenia Gravis limited the daily labels of Déa Oliveira; This month, Anvisa approved the first specific drug for the disease
Summary
The psychologist Déa Oliveira reported the challenges of life with MiaStenia severe, a rare autoimmune disease that causes muscle weakness; This month, Anvisa approved the first specific drug to the condition, bringing hope to patients.
Imagine seeing you, suddenly, unable to carry out basic tasks such as the transport of a supermarket bag or with intense pain when washing your teeth and you have chills just thinking that you will have to climb the stairs. Extreme fatigue and pain have become routine for the psychologist Déa Oliveira, who understood that something was wrong for his body for the first time in 2019. After many travels to doctors, he discovered the cause of his tiredness so strong: a Massimeniso Grandited Gravis. Autoimmune disease is considered rare by medicine.
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Déa realized that something was wrong with her body and that persistent tiredness became increasingly limiting. “On the eve of New Year’s Eve that year [2019]I was afraid for more than 20 days, I thought I had influence. Then came the double vision and I thought I had to change the glasses. But nothing was solved, “he remembers”. I couldn’t run with my dog anymore, sometimes I couldn’t even work. But for me it was a tiredness of my routine. “
Going to the supermarket and returning with a bag on foot, it was an infinite journey. Sometimes I had to sit on the street, wait for fatigue to improve, and there were moments, that I had to call my husband and ask him to take me. “
It takes until diagnosis
The diagnosis, however, was slow to arrive. Until the widespread Miaasastenia Gravis was confirmed, Déa suffered four different neurologists.
According to her, they passed six months until it received the correct diagnosis and begins the treatment.
What to MyASTENIA?
Myasttenia Gravis reaches the neuromuscular junction so called – the communication point between nerves and muscles.
The body produces antibodies that attack this region, compromising the transmission of signs and causing muscle weakness, explains the neurologist Dr. Marcondes França, head of the Department of Neurology Unicamp.
Among the most common symptoms are the fall of the eyelid, the double vision, the difficulties in speaking, chewing, swallowing and, in serious cases, even breathing.
The disease is estimated to occur from 100 to 200 cases per million people around the world. Therefore, it can be considered rare.
Relief to knowledge
In addition to the gravity of the condition, another challenge is the diagnosis. “Many patients manage years in circulation through the unanswered health system. The average estimate is up to two years late, because the symptoms can be confused with ophthalmological, orthopedic or language problems and only later reach the neurologist,” says France.
In the case of Déa, the confirmation of the disease was, in a certain sense, a relief: “I thought: now there is a name and a surname. Now you can treat. The worst was not to know.” Since then, it has started treatments with peridostigmina, corticosteroids and immunosuppressants, as well as surgery to remove thyme. Although drugs help to control symptoms, the side effects have weighed. “I reached 93 kilos, I looked in the mirror and did not recognize me. The clothes did not serve, my face became a ball. It was very difficult,” he says.
Even so, Déa learned to manage the boundaries of the body. Today it can lead a life close to normal, within the necessary adaptations. “Sometimes I forget that I have the disease and extrapolation. Then I need two, three days of rest to recover. But I learned to listen to the signs: when the effort comes, it’s time to stop,” he says.
Medicine was approved by Anvisa
While patients like storage fight daily to balance the treatment and quality of life, science advances. Anvisa approved, in September, IMAVY ™ (Nipocalimab), the first and only FCRN blocker available in Brazil.
The drug belongs to a new therapeutic class that acts directly on the cause of the disease, reducing harmful antibodies without compromising all the patient’s immunity. In clinical studies, he showed a rapid and supported improvement in symptoms, maintained up to 84 weeks.
For France, it is a milestone. “Nipocalimab is a target therapy, more accurate and with less side effects than corticosteroids. It is a very important novelty after so many years without significant progress for MiaStenia,” he says.
Déa sees with hope. “My diagnosis does not define me. From it, I built networks, I met people and I found a way to help others who cross the same situation. The new medicine that I think is a solution for many people with MiaStenia, will give an extra quality of life,” he says.
Source: Terra
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