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Guidelines for SMA in Covid 19 and beyond…..

Introduction-Guidelines for SMA in Covid 19
The current COVID pandemic has struck the world like a bolt from the blue. Named as COVID-19 in February 2020, it was declared a global pandemic by the World Health Organization ( WHO ) in March 2020. Lack of travel facilities/ restrictions of movements coupled with risk of getting infected have made life miserable especially for those suffering from chronic disorders.

Pediatric issues and vaccination
SMA is characterized by muscle weakness and atrophy resulting from progressive degeneration and irreversible loss of the anterior horn cells in the spinal cord (i.e., lower motor neurons) and the brain stem nuclei.

Genetic testing and counselling
Spinal muscular atrophy (SMA) is a genetic condition. It is one of the commonest inherited neuromuscular disorder.

Respiratory care
Respiratory care is one of the mainstay management issues in children with SMA.

Spinal deformity: Monitoring and correction
These children need continuous monitoring of spinal deformity and it is well known that there is around 80% chance of development of scoliosis in SMA requiring surgery.

Physiotherapy
This document aims to provide interim guidance about the standards of physiotherapy management for SMA patients in home care setting as well as in Hospital care settings.

Dietary Guidelines
Nutrition plays a very important role in the management of SMA.The more severe the type of SMA, the more likely to have nutrition related health issues, which includes difficulties with feeding, chewing, swallowing and reflux.

Safe practices for care givers
Children with spinal muscular atrophy are at a high risk for acquiring infection. Caregivers face a lot of challenges while caring for their children with spinal muscular atrophy in the present time.

Hospital admission
During the pandemic, it is difficult to take children to hospital. However, a critically sick child needs to be evaluated and admitted without delay.

Mental health issues

Children suffering with Spinal Muscular Atrophy, depending on the type of SMA, may have possible complications that include contractions of muscles and tendons, scoliosis, episodes of aspiration and difficulty in breathing.

Telemedicine and Helpline

The interest in telemedicine and telehealth has increased recently due to technological advancement. This technology was first used by NASA to transmit physiological parameters from both spacecraft and spacesuit.

Contributors

Cure SMA India executive members and scientific advisors of the Cure SMA India.

DISCLAIMER

These guidelines are solely for the purposes of disseminating general information and providing guidance to the caregivers and patients of Spinal Muscular Atrophy during COVID-19.

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