As Sjogren’s patients and caregivers of patients, you are likely very aware of what is happening with Covid-19. Hopefully, you have been reading the announcements put forth by the Foundation describing precautions to take and understanding if your immune system is compromised from medications. As Chair of the Board of the Sjogren’s Foundation, I just wanted to share some basic information as well as share what we are doing about events on our schedule. While you are taking personal precautions, the Sjogren’s Foundation supports social distancing as a key step in slowing the spread of this pandemic.
Here is the consolidated information on event changes and precautions for Covid/19 from the Sjogren’s Foundation.
The Sjogren’s Foundation Supports Social Distancing
The Sjögren’s Foundation, in concert with our medical advisors, is closely monitoring the coronavirus/COVID-19 and what the Foundation and our patients should be doing.
The Foundation is committed to the health and safety of our patients, their families and our volunteers. Due to the unpredictable progression of the virus, we have come to the difficult decision to cancel or postpone all events through April 15th.
At this time, we, unfortunately, have to announce that our April 3rd and 4th National Patient Conference in Phoenix, Arizona, will be postponed. We are working to re-schedule the conference for this June, so please stay tuned for exact dates. We will be announcing them as soon as we can re-negotiate our contract.
As stated in the quote above, we are looking at moving the NPC to June. We need to stay at the same location and transfer the hotel contract to a new date. This link will keep you up to date on the 2020 NPC and the new schedule!
In addition to postponing the 2020 NPC, the Foundation has canceled the Orlando Walk for Sjogren’s which was to be held March 14th. Orlando Walk for Sjögren’s . At this time, there is no plan to reschedule.
When April 15th approaches, we will be able to assess the state of the Covid-19 spread and make decisions about events that are scheduled after April 15th. We will certainly keep everyone informed.
We also recommend that you and your loved ones practice social distancing. This means staying six feet away from others and not participating in group events. In my area (Seattle) all schools, universities, most businesses, and places of worship are all closed. People are working from home, attending class from home, and staying in touch via phone and Zoom.
The Sjogren’s Foundation Covid-19 Precautions for Sjogrens Patients
The Foundation released an excellent letter, informed by our medical advisors, about the virus and how you should care for yourself as a patient. Here is the link: COVID-19/Coronavirus Precautions for Sjögren’s Patients
Most notable (to me) is understanding which medications may suppress our immune system (and which do not). We are more familiar with our medical conditions (and age) that put us at greater risk. My personal opinion, in most situations, is that information is power. So I am now clearly informed on my actual risks given my age, medications, and health conditions.
Steven Taylor, CEO and President of the Foundation wrapped up his letter as follows:
We know that the coming weeks will include times of stress and anxiety, as we are all charting this unknown territory. Rest assured, that the Foundation will be alongside you as we continue to offer support and advice to Sjögren’s patients on COVID-19.
We will continue to update this page as more information is released. Be safe and continue to listen to your health care professionals.
I am washing my hands a lot, wiping down all grocery carts and baskets, and sanitizing the gym equipment at my gym. I am not gathering with groups. And I’m keeping a reasonable distance from all but my family. I not only want to stay healthy but to also do my part to slow the pandemic.
As for stress, I am also meditating a little differently to amp up my resilience and reduce my anxiety!