Americans have adapted and adjusted to a new way of life over the past few months as a result of the COVID-19 pandemic. We are all learning to survive in a socially-distanced, work-from-home environment as we take precautions to protect ourselves and those around us. However, as restrictions are being lifted, there are people that still need you to stay diligent.
To bring awareness to the risks and safety measures needed for immunocompromised individuals, we engaged with encephalitis advocacy foundations for advice on how YOU can help during this unprecedented time.
Practice precautionary measures
We are all aware of our own lifestyle modifications, such as proper handwashing and standing six feet apart. What may not be as apparent are the additional actions needed for immunocompromised individuals. As many states begin relaxing their stay-at-home orders, those considered at-risk must remain vigilant in safeguarding themselves from potential exposure to the virus.
Hashimoto’s Encephalopathy SREAT Alliance (HESA) reminds that, “When you stop to think about how easily something like this can spread, even from just one interaction with someone affected, you become a lot more cognizant of your actions.”The Encephalitis Society also mentions that “If you are on immunosuppression medication, please remain vigilant as you are more likely to get a severe infection, so please consider self-isolation and remember to wash your hands!”
It’s critical for everyone to follow recommendations of the Centers for Disease Control and Prevention, CDC, who has issued guidelines for both the general population and high-risk individuals. Autoimmune Encephalitis Alliance, Inc. guides us to, “Please act responsibly - not just for your own protection, but for those around you that may be particularly vulnerable to serious outcomes from this disease. We are all responsible for the wellbeing of ourselves and those around us.”
Social isolation comes with the added challenges of accomplishing daily tasks. There are simple action steps that you can take to help those who may need assistance. For those who are immunocompromised, Encephalitis411.org recommends, “ask family, friends or neighbors to run errands. Sterilize anything coming in from the mail or any stores.” HESA shares that, “the isolation can be hard to cope with but going out (unless absolutely necessary) is not worth the risk in the long run.”
The Encephalitis Society also reminds us that, “We also need to remember that our mental health and wellbeing is important.” They have been hosting virtual gatherings and support groups on various social media platforms. “We have seen a huge surge in demand for our support team with many people worried about the impact of COVID-19 on their recoveries.”
Caregivers also need support during this critical time. Linda Nourse from Anti-NMDA Receptor Encephalitis Foundation Inc. mentions some of the ways that advocacy groups support both patients and caregivers. “Our foundation serves to raise awareness within the medical community and to support patients – like my son, David, whose ongoing battle with anti-NMDA is nearing the six-year mark – and their families and caregivers - because the most challenging part of this, or any potentially terminal illness is the feeling of aloneness.” You can take the first step by seeking out ways to help, such a calling a neighbor or bringing a meal. Even small acts of kindness can have a profound impact on others.
The Anti-NMDA Receptor Encephalitis Foundation Inc. reminds us that we should “raise awareness and help promote faster and more accurate diagnoses.” It is critical to educate the public about at-risk communities. For example, in addition to those with encephalitis, individuals with cancer, rheumatoid arthritis, fibromyalgia, and diabetes are also considered at-risk for COVID-19.
Caterri Woodrum, CEO and Executive Director of Autoimmune Encephalitis Alliance, Inc. says, “I'm a cancer survivor with a seriously compromised immune system resulting from a year of cancer treatments. I share the concerns that many in our autoimmune encephalitis patient and survivor community have regarding the extra risk we run with dysfunctional or suppressed immune systems. ”You can do your part to raise awareness through sharing valuable information, such as blogs, websites, podcasts, and social media posts.
Through practicing precautionary measures, offering assistance, and raising awareness, you can help be a hero in a post–COVID-19 world. “Your decisions and choices you make today impact everyone else tomorrow!” – HESA.
Below are valuable resources that are available to patients, providers, and caretakers. Let’s work together to protect our immunocompromised population. As the Autoimmune Encephalitis Alliance, Inc. states, “We are in this together - neighborhoods, cities, states, and countries. We will get through this.”
Anti-NMDA Receptor Encephalitis Foundation Inc.: https://www.antinmdafoundation.org/
Autoimmune Encephalitis Alliance, Inc.: https://aealliance.org/
The Encephalitis Society: www.encephalitis.info
Podcast: answers many of the questions people affected by different types of encephalitis may have about coronavirus: https://www.encephalitis.info/blog/covid-19-and-encephalitis-podcast
Brainwalk app: a special Covid19 edition set to keep brains and body fit and healthy as well as being another way people can connect safely with each other no matter where they are in the world! https://www.encephalitis.info/brainwalk
Hashimoto’s Encephalopathy SREAT Alliance (HESA): http://www.hesaonline.info/
Public service announcement video: https://youtu.be/Mm0b-A6UhPQ
Quest Diagnostics COVID-19 molecular and serology testing information: https://www.questdiagnostics.com/home/Covid-19/
CDC Guidelines for Higher-Risk Individuals: https://www.cdc.gov/coronavirus/2019-ncov/need-extra-precautions/people-at-higher-risk.html
CDC Guidelines for Protection: https://www.cdc.gov/coronavirus/2019-ncov/prevent-getting-sick/prevention.html
Thank you to the encephalitis advocacy foundations that provided quotes:
Phillippa Chapman - Director of Services for The Encephalitis Society
Maddy Boehme - Co-Vice President of Hashimoto’s Encephalopathy
SREAT Alliance (HESA), Caterri Woodrum - CEO and Executive Director of Autoimmune Encephalitis Alliance, Inc.
Linda Nourse - Member of Anti-NMDA Receptor Encephalitis Foundation Inc.
Becky Dennis - Board president of Encephalitis411.org