Directions Spring 2020

What You Need to Know to Continue Protecting Yourself fromCOVID-19

Coronavirus (COVID-19) has impacted the SMA community—along with everyone else in the world. Cure SMA remains vigilant in monitoring and responding to the needs of the SMA community with accurate and timely information, as your health, safety, and well-being are our top priority. Here are some good reminders on what to look for, including symptoms of COVID-19 and how to manage daily life with SMA in the pandemic world. And don’t forget to keep an eye on the Cure SMA COVID-19 Information Center on our website (www.curesma.org/covid19) for the latest updates and resources for the SMA Community.

What should I look for in identifying COVID-19? Typical symptoms appear 2 to 14 days after and may appear as fever, cough, shortness of breath, chills, repeated shaking with chills, muscle pain, headache, sore throat, or sudden new loss of smell and taste. For people with SMA who develop symptoms suggestive of COVID-19, please contact your healthcare team to let them know. Please seek emergency healthcare if you experience trouble breathing and/or trouble speaking, persistent chest pain or pressure in the chest, new confusion or difficulty waking, or bluish lips/face or low oxygen saturations that do not improve with secretion removal and coughing or usual home breathing support if used. If you use at home breathing support and/or feeding support, please take your home equipment with you.

How should I best prepare for the continued isolation periods? Isolation protocols are normal in the SMA community during flu-season, and COVID-19 will mean a longer isolation period than the usual viral respiratory season. We recommend having at least an additional 2 weeks of medications and supplies on hand. This includes supplies for equipment, such as cough machines and other respiratory equipment, formula and feeding supplies, and any other regularly ordered supplies from durable medical equipment companies and suppliers. If you have state Medicaid insurance, some of the guidelines have been relaxed and you may be able to obtain additional supplies.

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DIRECTIONS | SPRING 2020

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