Many mySMAteam members have concerns about their risk for contracting and experiencing serious complications from the new coronavirus (COVID-19).
The first question many people with SMA, or parents of children with SMA, have is whether SMA puts them at increased risk. The Centers for Disease Control and Prevention (CDC) have warned that people with chronic health conditions need to be especially careful during the COVID-19 pandemic. Heightened levels of caution apply to both people who have SMA and their caregivers.
The SMA community is already accustomed to managing increased risk for contracting viruses. In a recent webinar on SMA and COVID-19, Kenneth Hobby, president of Cure SMA, noted that people with SMA probably are more used to the idea of avoiding infectious illnesses, such as the flu, than the general public. People with SMA and their caregivers traditionally self-isolate and take extra precautions during cold and flu season.
Hobby reassured the SMA community, saying, “We are very well set up. People know the quarantine protocols. … You are the world's masters in social distancing and staying safe. That's going to help us through this situation.”
Respiratory symptoms are a particular concern for people with SMA. Breathing difficulties arise from weakness in the intercostal muscles (muscles that support the chest wall). This can lead to respiratory complications, particularly in children with SMA type 1 or SMA with respiratory distress (SMARD).
For this reason, it’s especially important to be aware of any early symptoms of COVID-19. One challenge for those who have breathing difficulties is figuring out the difference between typical issues and the symptoms of a viral illness. If you have any concerns, make sure to reach out to your health care provider.
People with SMA and their caregivers also face the challenge of accessing treatments for SMA and its complications while needing to physically distance as much as possible. Those who are taking Spinraza (nusinersen) should discuss with their health care providers whether to proceed with a scheduled dose or delay treatment. According to Biogen, the manufacturer of Spinraza, some people have had their treatments postponed in part because hospitals have prioritized COVID-19 concerns. Cure SMA recommended that Spinraza treatments not be delayed by more than two weeks. It is important to talk to your health care provider about whether you should receive any treatments as scheduled or make changes.
Author Ben Mattlin, who lives with SMA, wrote an opinion piece in The Washington Post about the pandemic and how it has — and has not — changed the lives of those with disabilities. In the article, Mattlin pointed out that susceptibility to infection is nothing new for people with SMA, and the necessity of relying on caregivers makes it impossible to completely self-isolate. “Because we rely on outside help, we’re always vulnerable to whatever germs our personal-care aides may, despite their best efforts, inadvertently bring into our homes,” he wrote. “It’s a risk we have to take — always.”
First, stay up to date with the latest CDC information and guidance.
In addition to the safety measures you routinely take to protect the health of yourself and your loved ones, you may want to develop a contingency plan in case you or they are unable to leave home. Consider these steps:
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