TISMA – Together in SMA
We are happy to introduce you TISMA – Together in SMA web page which is dedicated to SMA awareness https://hcp.togetherinsma.eu/
We are happy to introduce you TISMA – Together in SMA web page which is dedicated to SMA awareness https://hcp.togetherinsma.eu/
For update 20.4.2020 follow this link
(for translations visit https://ern-euro-nmd.eu/covid-19-and-people-with-neuromuscular-disorders-world-muscle-society-position-and-advice/ )
The category of neuromuscular disease (NMD) covers a wide range of different diagnoses with widely varying levels of disability even in people with the same diagnosis. It is difficult, therefore to make specific recommendations that apply generally. The following are recommendations that apply to numerous neuromuscular disorders. These recommendations are designed primarily for patients, carers, general neurologists and non-specialist medical providers. They are also intended to inform neuromuscular specialists particularly regarding frequently asked questions and basic service requirements. In-depth reference links are provided.
1. Are people with neuromuscular disease (NMD) at higher risk?
National neurological associations and neuromuscular networks (Association of British Neurologists, European Reference Network EURO-NMD, others) have produced guidance on the impact of Covid-19 on neurological disorders and their management. These documents define the risk of a severe course of Covid-19 as high or moderately high in all but the mildest forms of NMD. Features conferring a high or very high risk of severe disease include, for example:
2. What do people with NMD need to do to avoid infection?
Covid-19 spreads through droplet infection when an infected person coughs, sneezes or talks, or potentially via touching a surface carrying infectious droplets. People with NMD and a high risk of a severe course of Covid-19 infection, as defined above, should undertake the following precautions:
3. What consequences does the risk of Covid-19 infection have for treatments used in people with NMD?
4. What needs to be done to assure ventilatory services when isolating (LVR bags, home ventilators etc.)
5. When should people with NMD seek admission if they develop symptoms of infection?
Inpatient admission should be avoided if possible, but should not be delayed when necessary. This can be a difficult decision. People with NMD need to be aware that:
6. Can treatments for Covid-19 have effects on neuromuscular disease?
7. What should neuromuscular specialists do to assist Emergency Medical and Intensive Care decisions on admission to units, escalation of treatment, and ceilings of care in neuromuscular patients?
Decisions on patient admission to Intensive Care may be affected by anticipated or existing capacity problems. Triaging may have been instituted. This can have practical and ethical consequences.
8. What patient support should neuromuscular centres provide?
Neuromuscular centres and specialist services should aim to provide the following:
Further information:
Documents are available at
https://www.theabn.org/page/COVID-19
European Neuromuscular Centre website: www.enmc.org
Authors of this document:
Collated by
Maxwell S. Damian, PhD, FNCS, FEAN
The Members of the Board of the WMS (www.worldmusclesociety.org)
The members of the Editorial Board of Neuromuscular Disorders, official journal of the WMS March 28th 2020 1600
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