A get-together of families of children with spinal muscular atrophy was organised under the aegis of Cure SMA Foundation and Aster MIMS in Kozhikode on Friday.
Addressing the media here on Friday, chief operating officer of the Hospital Sameer P.T. said the get-together was being organised to create awareness regarding the rare disease among general public and to mobilise public opinion to pressure the authorities to make the cure for the disease available in India at an affordable rate.
Head of the Department of Paediatrics at the hospital, E.K.Suresh Kumar, said that Spinal Muscular Atrophy was a rare neurological disorder found in one out of 10,000 children. The disease is characterised by muscles becoming weak, thus leading to complete paralysis of the body. The cure for SMA, which cost millions, is not available in India, he said.
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The SMA mainly affects new-born babies while it can happen at a later stage of childhood too. At the get-together, the families of SMA patients could meet experts from various disciplines that are necessary for the treatment. “By multidisciplinary approach, we could treat the specific problems faced by the SMA patients, though a complete cure is not easy”, said Smilu Mohanlal, paediatric neurologist at the hospital.
Dr. Raseena, patient empowerment director of Cure SMA Foundation. said that there were more than 300 SMA patients registered under the foundation in the country, of which 60 were from Kerala. Families of patients from different parts of the country took part in the get-together on Friday.