Community workshop on Spinal Muscular Atrophy held in Thiruvananthapuram

A community workshop titled “Kaikorthu – Together in KARE This New Year,” aimed at empowering the families of children affected by Spinal Muscular Atrophy (SMA), was organised on Friday at the CRC Auditorium here in the presence of Health Minister Veena George. It involved medical experts, patient advocacy groups, and families affected by the condition. 

 Ms. George said that the programme, which initially covered 21 children, now had 110 beneficiaries. She added that the aim was to extend the age limit for providing the medicine for up to 18 years. 

SMA is a rare neuromuscular disorder characterised by the degeneration of motor neurons, leading to progressive muscle weakness and wasting. The disorder does not affect any brain functions, and children affected possess age-appropriate cognitive abilities, said Mary Eype, Head of the Department of Paediatric Neurology. 

However, the condition often results in psychological challenges, as the affected children are unable to move independently. Dr. Eype added that this disorder is comparable to the Motor Neuron Disease seen in adults. She cautioned that if the disorder is left untreated, the condition could result in serious health complications and may even prove fatal. 

 Following the programme, the Minister interacted with the children affected by SMA and their parents. Children affected by SMA showcased their abilities by singing, and a calendar featuring their artwork was released.