The Center for Research and Rehabilitation of Hereditary Ataxias (Cirah). The only one of its kind in Cuba, prioritizes social work as a strategy to improve care for patients and carriers of this pathology.
This institution has a comprehensive follow-up program for cases of Spinocerebellar Ataxia type II (SCA2), the most common molecular form. With a prevalence rate exceeding 47 per 100,000 inhabitants in the country. Treatments are based on vitamin therapy and rehabilitation.
Annalies Estupiñán Rodríguez, an expert in this area, emphasized to CNA that, since ataxia is a disabling and incurable condition. Also social workers have the responsibility to assess the specific conditions of each case. And facilitate the families’ quality of life.
She added that this pathology has psychosocial implications because there is generally more than one patient in a family. Moreover which requires creating mechanisms to promote economic stability.
The specialist noted that since 2009, workshops have also been held to raise awareness about the specificities of ataxia and provide psychological guidance to caregivers. SCA2 is an incurable neurodegenerative disorder that primarily affects movement coordination, balance, and language. Its onset varies between the ages of two and 65.
Worldwide, the prevalence rate is three to five patients per 100,000 inhabitants, and the province of Holguin has higher rates in towns such as the municipalities of Baguanos and Cacocum.
With information from CNA
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