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. The children and adults with spinal muscular atrophy (SMA ) are worst affected because this subgroup of population needs the utmost and continuous medical care and attention to live life optimally.
With an endeavor to help children with SMA during this trying time, the Cure SMA Foundation of India along with its scientific advisors had come up with certain guidelines for management of the special needs of these children. The focus was to provide guidelines as to how to provide care at home and how to pick up complications of the disease and intervene.
Following few online meetings and telephonic conversations, a Task Force with Multidisciplinary Physicians and Surgeons closely related to the care of SMA children from all parts of India, was formed to address the various aspects of care pertinent to the COVID – 19 pandemic. After a brain storming session and getting inputs from the task force members and care givers a plan was made to collate data according to the expertise of the various people in the task force. The data collection and writing was done in breakneck speed, which has allowed errors to creep in. However, as a rule of thumb, the editor has tried to keep things simple with originality presented by the authors and contributors. This is the first draft of these Guidelines and we are committed to continually improve this with more information and contribution from Task Force Members in due course of time.
With availability of genetic modifications, which at present is available to an extremely small subgroup of children in India, hope has flooded the horizon. Nevertheless, the quality of life of these children is primarily dependent on persistence of multi-specialty care by the medical and paramedical fraternity. Here, we will be presenting the various aspects of care pertinent to the COVID-19 situation and they are available as drop down menu.