Holguín: Multidisciplinary approach used in patients with Ataxia
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The Center for Research and Rehabilitation of Hereditary Ataxias (Cirah) in Holguín, is the only center in the country dedicated to treating patients with ataxia using a multidisciplinary approach aimed at improving the quality of life and hope for patients suffering from this disease.
Every September 25th, World Ataxia Awareness Day, Cirah reaffirms its commitment to the well-being of patients and families who carry the gene or have developed Spinocerebellar Ataxia type II (SCA2), whose prevalence rate in this province is 47.86 cases per 100,000 inhabitants, one of the highest worldwide.
Acording to Yackeline Medrano Montero, head of this Center, an increase in cases has also been detected in neighboring provinces such as Las Tunas, Granma, and Camagüey, which leads to the strengthening of policies and actions aimed at improving diagnostic and treatment protocols, since there is currently no cure.
She explained that one of the main challenges in diagnosis is the lack of access to reagents needed for predictive testing due to technological limitations. This hampers the ability to properly guide families and couples carrying the gene.
She added 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, as well as a psychosocial component due to the inability to support oneself financially.
SCA2, which affects more than 87% of diagnosed patients, is the most severe form of ataxia and manifests with speech, gait, and balance disorders, as well as a psychosocial impact stemming from economic incapacity.
Medrano noted that the institution treats patients from all over Cuba and has developed research and clinical trials, validating treatments based on vitamins and zinc sulfate, which include multisystem, cognitive, and speech therapy rehabilitation programs.
According to specialists, these multidisciplinary treatments can improve patient conditions by up to 70 percent, relying on the integration of physicians, psychologists, rehabilitation specialists and social workers, among others.
Those carrying 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 diagnosed hereditary ataxia patients and approximately 10,000 people at risk of developing the disease, with a national prevalence of 30 cases per 100,000 inhabitants, a figure above the global average.
