Society must support rare disease patients: Kerala Health Minister

Thiruvananthapuram, Aug 23 (IANS) Kerala Health Minister Veena George on Saturday called for greater social involvement in the care and treatment of patients suffering from rare genetic disorders such as Spinal Muscular Atrophy (SMA).

She stressed that families of such patients require significant community support.

The minister was speaking while inaugurating the National SMA Conference here.

“Kerala was the first state in the country to extend compassionate intervention for SMA patients, with both the government and society playing crucial roles,” said George.

“ Several affected children in the state have already received financial assistance through crowdfunding initiatives. To ensure that all SMA patients in Kerala get access to life-saving treatment, the state government has launched an official crowdfunding programme,” added George.

She also urged citizens to actively contribute to the campaign, highlighting that community participation was essential for its success.

At the meeting, around 50 children affected by SMA took part, sitting in wheelchairs.

The participants came from various states in the country to attend the two-day event, which discussed treatment-related challenges and support systems.

SMA is a rare neuromuscular condition that weakens muscles, gradually affecting mobility, bones, and breathing.

It remains one of the leading causes of infant mortality.

In India, it is estimated that one in every 7,744 infant deaths is due to SMA.

Although treatment has recently become available in India, the cost remains prohibitively high. The required injection costs nearly Rs 13 crore, an expense far beyond the reach of any family. This makes government and community support critical for patients struggling with the condition.

In Kerala, according to figures, there are more than 200 patients with SMA.

Consanguineous marriage, or marriage between close relatives, is linked to an increased risk of SMA because SMA is an autosomal recessive disorder, and closer relatives are more likely to share the same recessive gene defects.

--IANS

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