Hello AE Family,
IAES takes pride in keeping our community up-to-date with the latest news in the field of autoimmune neurology and topics that directly impact our lives. Our motto, “Education is Power” continues to ring true as education does help to steer the best outcomes. Our motto is particularly appropriate in regard to the COVID-19 Virus.
Information about the COVID-19 continues to dominate world news and likely will for some time to come. We have prepared a flyer of the preventive measures you can take as recommended by the guidance from the Centers for Disease Control and Prevention (CDC). You can print out and post this flyer at home, school, doctor’s offices, work, place of worship, or anywhere in your community. In addition, we have created an ‘info meme’ that can be easily and widely shared on social media platforms. International Autoimmune Encephalitis Society continues to monitor the situation with the AE community in mind.
The severity of illness or how many people will fall ill from COVID-19 is unknown. However, you are at higher risk if you are immunocompromised due to the immune suppressant medications used in the treatment of autoimmune encephalitis. IAES encourages you to stay informed by following updates from the CDC and/or your local health department. The likelihood of getting COVID-19 depends on where you live in the world and may change quickly.
COVID-19 is a novel virus, and there is still much we have yet to learn. One fact we do know is that an infected person can be a carrier, capable of spreading the virus to others for several days before they begin to show symptoms or know they are sick. Each infected person has the ability to pass the virus on to 2 or 3 people. Implement these hygiene practices now to avoid getting sick. Because there is no way of knowing who a carrier might be, assume you may come in contact with someone who is and institute these preventive hygiene practices and pro-active planning steps right now.
In addition to your advocacy of spreading COVID-19 preventative awareness and implementing the recommended hygiene habits the CDC recommends, plan and prepare ahead should you need to self-quarantine. If a member of your household becomes sick, all family members will have to self-quarantine for 14 days. Because the AE patient’s immune system is compromised, this also means that it takes AE patients longer to fight off a virus and the self-quarantine length may extend beyond the mentioned 14 days. Make sure you have enough food, water, other basic supplies on hand should you need to remain at home for 14 days. Find out if your pharmacy delivers and make sure you will have enough of your medications on hand. Contact your doctor should you have a fever, cough or shortness of breath.
CREATE A NEIGHBORHOOD SUPPORT CIRCLE
I live in the state of Oregon in the U.S.A. The first two cases of COVID-19 were announced last weekend and are located 15 minutes from my home. The Nursing facility in Washington State that was so badly impacted that is being reported daily on national news is a few hours away. While I was stocking up at the supermarket for supplies the other day, seeing the bare shelves, I felt an eerie feeling of being involved in the beginning of an impending community health crisis.
The woman who helped me at the Deli Counter shared a story of how her friend, who was a second-tier transportation bus driver for the Nursing Home that had been so hard hit had been instructed to self-quarantine and it was not being reported on the news. I realized that there was a true possibility that my husband, son and I may have to self-quarantine at some point during this virus outbreak and we do not have any family support.
As I drove home with my car laden with groceries, I started thinking about staying home for two weeks without back up support. We have lived in the same house for 30 years, and this past year our next-door neighbor, who we loved dearly, moved away and our neighbors directly across the street sold their house. Both neighbors had been a wonderful support to us and us to them over the years and I mourned the loss.
However, we had started to get to know the young couple across the street and we were already lending each other a helping hand. She has a home business as a massage therapist and a 14-month-old daughter. They were at high risk, I realized. There is a couple in their 80’s two doors up from us and they have no family. They are at high risk. Our new neighbor next door, a bachelor and Uber driver is high risk. Another neighbor of ours is a mailman and his wife works at the local elementary school. They are at high risk. The couple next door on our other side are in their late sixties and he has health concerns. They are at high risk. Next to them is a couple whose sons are grown, married and parents now, empty nesters who are not high risk. I realized that the first 8 houses on our block have 6 high-risk households. If I have concerns, they must too. I thought we need to create a neighborhood support network. We will be the best possible back up system for each other and everyone’s concerns can vanish. That’s exactly what I did.
One by one I contacted my neighbors and explained my idea. If one of us became ill, we would have to self-quarantine. Other neighbors in the support network could drop off supplies and meals and pick up prescriptions or whatever was needed for that household. We could all chip in and help where and when we could. We would become our own best built-in back-up system.
The smiles, relief, and enthusiasm everyone greeted the idea with did not surprise me. We needed each other, and it would be a great way to get to know our new neighbors. I opened a text message group with everyone included and typed up a telephone directory. Using a plastic protective sleeve, I included the IAES preventative health measures COVID-19 flyer back to back with the directory. I texted the ‘Neighborhood Support Network’ group to let my neighbors know I would leave their telephone list by their front door. My phone started pinging away as my message was read and I got the chance to visit with all of my neighbors as they greeted me upon my arrival. We laughed and joked and shared stories with each other. Everyone was so excited about the idea and grateful to live among such supportive neighbors.
I feel safer tonight. I know that if one of my neighbors gets sick or just needs a helping hand, they will text or call. Everyone was ‘all in’ and ready to do their part to support the whole. We are going to be just fine on SW Parkview Loop in Beaverton, Oregon. We plan on keeping our network as a permanent network solution too. There is a silver lining in everything I thought. My life just became richer. I hope you do the same in your neighborhood. We are #StrongerTogether.
With Fondness for you all,
International Autoimmune Encephalitis Society