The Center for Research and Rehabilitation of Hereditary Ataxias (Cirah in the Spanish acronym). Located in the province of Holguin and the only one of its kind in Cuba. Promotes the hope and quality of life of patients with this disease through a multidisciplinary approach.
Every September 25th, World Day to raise awareness about this condition and its prevalence, this institution prioritizes the well-being of individuals and families. Who carry the gene or have developed Spinocerebellar Ataxia type II (SCA2) in Holguin. Whose prevalence rate in this province is 47.86 affected per 100,000 inhabitants, one of the highest in the world.
Yackeline Medrano Montero, head of this center, told CNA that there has been a recent increase in cases. Even in neighboring provinces such as Las Tunas, Granma, and Camagüey. This has led to the strengthening of policies and actions aimed at improving diagnostic and treatment protocols, as there is currently no cure.
She stated that this goal is hampered by the limited access to reagents used in predictive diagnostic tests. Caused by technological obsolescence, which are used to provide guidance to families and couples who are ill or carriers of the gene.
She noted that SCA2 is the most severe of the 50 existing molecular forms, affecting more than 87 percent of those diagnosed. Its clinical manifestations include speech, gait, and balance disorders. In addition to a psychosocial component due to the inability to support oneself financially.
The expert noted that the institution treats patients from all over Cuba and that, through research and clinical trials, treatments with vitamins and zinc sulfate have been validated. Also which include multisystemic, cognitive, and speech therapy rehabilitation.
Regarding this, Julio César Rodríguez, a specialist at CIRAH with more than 20 years of experience in patient rehabilitation. Indicated that these methods improve the conditions of these cases by up to 70 percent, and that this depends on the involvement of physicians, psychologists, rehabilitation specialists, social workers, among others.
Those who carry the gene also benefit from this program. Which aims to prolong the onset of symptoms and provide a better quality of life, based on family support.
In Cuba, there are more than a thousand patients diagnosed with some type of hereditary ataxia. Grouped in more than 200 households. Futhermore there are approximately 10,000 descendants at risk of developing the disease. This places the national prevalence at 30 cases per 100,000 inhabitants. A figure higher than the global estimate.
With information from the Cuban News Agency
Translated by Aliani Rojas Fernandez
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