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Due to a rare congenital disorder, Paula Paiva cannot smile or show any emotion. Update on this extremely rare disease.
This “evil” seems difficult to believe, but in any case, it does not make you smile. Besides, Paula Paiva, a 26-year-old Brazilian, will never be able to do it. Suffering from Moebius syndrome, the muscles in his face are paralyzed.
A rare birth defect with facial paralysis
Even as a child, Paula could not “live” normally.
“I ended up in intensive care because they had to give me a tube: I couldn’t feed myself with breast milk. The doctor at the time could not determine my diagnosis and said I would have a life expectancy of three years at most“, she tells New YorkPost.
After a battery of tests, health professionals finally discovered that the little girl had Moebius syndrome – a very rare congenital disorder characterized by unilateral or bilateral paralysis of the facial muscles and the external muscles of the eye, which limits facial expressions.
“It may also be associated with other cranial nerve palsies, orofacial abnormalities, and limb malformations“, specifies the site Orphanetportal for rare diseases and orphan drugs.
The young woman suffers from anxiety
If the content creator fought to live normally (for example, she only took her first steps at the age of two), she still cannot, at the age of 26, “activate ” the muscles of his face.
In an interview, she confides that she “cannot smile, close their mouth or eyes, or show any emotion. I suffer from anxiety because of this.”
A state of distress which increased during adolescence; period when the young girl was the victim of mockery.
“I remember always receiving different looks, jokes and hurtful comments. But the worst period was between 10 and 12 years old. I heard these thoughts and felt bad. So I isolated myself to avoid hearing these comments.”.
Paula Paiva will end up changing schools, at the urging of her parents, where she will manage to have her differences accepted and integrate socially.
Today, the young woman wants to lift the veil on her illness, which is still little known to this day, by sharing its progress on social networks.
Moebius syndrome: what is the treatment?
Treatment is symptomatic and management also involves a lot of support.
According to the Orphanet website, a multidisciplinary clinical approach is necessary “in order to optimize the diagnosis, treatment and advice given to patients“.
“Microneurovascular free muscle transfer is the solution of choice for facial paralysis and resuscitation of the midfacial region. Ocular abnormalities are treated by standard methods. Rehabilitation (physiotherapy, oral motor skills, psychomotor skills/speech) must begin as early as possible and be adapted over time based on functional assessments“, relates the site.
He also specifies that the appearance of the patient’s face has a psychological impact, “communication between the affected child and his parents is one of the topics to be discussed“.