The president of Brazil, Lula da Silva, approved the Law No. 15,094, which requires clinical examinations to identify malformations related to the Fibrodysplasia Ossificans Progressiva (FOP) in newborns. The extent seeks to detect this rare genetic disease early.
Mandatory examination in routine consultations
The physical examination will be mandatory in routine consultations in public and private networks, with coverage guaranteed by the Unified Health System (SUS)This step will allow early signs of the disease to be identified in newborns, such as bilateral malformations of the big toes.
What is Fibrodysplasia Ossificans Progressiva?
FOP, also known as Myositis Ossificans Progressiva, is a rare genetic disease. It affects one in two million people and currently only 4,000 cases have been recorded worldwide.
The disease causes the formation of extraskeletal bones, affecting tendons, ligaments and other parts of the body. This severely limits the movement and quality of life of those who suffer from it.
Main signs and symptoms
The disease usually manifests itself in childhood, especially between 0 and 5 years of age. Early signs include difficulty moving the neck, shoulders, and limbs.
In addition, many patients have problems breathing, opening their mouths and eating due to the progressive ossification process. A characteristic feature is the malformed big toes, present in all patients, and in some cases, also the thumbs.
Other congenital malformations include abnormalities in the cervical vertebrae and a short and thick femoral neck.
Specialized treatment and assistance
Although FOP has no cure, its treatment is multidisciplinary. Unified Health System (SUS) offers free medications, such as corticosteroids and anti-inflammatories, that help control symptoms and inflammation.
Treatment is provided in teaching and university hospitals, as well as in Specialized Rehabilitation Centers present in all states. These institutions offer therapies adapted to the needs of each patient.
