To our RPF family,
We are in an unprecedented time that can be very stressful and scary for us all, whether we have an autoimmune disease or not. We are dedicated to bringing you facts you need—but also to encouraging our community through this time. As we immersed ourselves in the factual information, even we struggled to stay encouraged. We are human too and this situation is daunting. Yet, we are sure of these things:
- Knowledge is power. We know this from studying our own diseases. Find balance. Educate yourself so that your actions will be as safe as possible, but avoid information overload. When you reach that point, take a break from the news.
- Don’t panic. There are many efforts going on to ensure that we are safe and that our meds will remain available.
- Slow down. This is unprecedented permission to SLOW DOWN. If you have juggled a full calendar while trying to navigate your disease, now you have an opportunity to slow it all down. Take it from us (Kelly and Shannon)—a long-term homeschool mom of 5 and a secondary school principal—the most important thing we can learn and teach kids right now is how to navigate changing times.
Key issues for people with rheumatoid disease
The COVID-19 pandemic presents specific problems for people with rheumatoid disease (RD). We are staying informed on these issues and advocating for you. First, there is a higher risk of infection for people with suppressed immune systems. However, the actual risk of serious illness from COVID-19 for people with autoimmune disease is unknown. The COVID-19 Global Rheumatology Alliance is working to learn more so that recommendations can be made (more on that below). Second, drugs that we use as treatments (hydroxychloroquine and others) are being studied for use in COVID-19, so some drug shortages have already occurred and others are possible.
WHAT CAN YOU DO
- If you have a rheumatic disease, complete the Patient Experience Survey here with the COVID-19 Global Rheumatology Alliance.
- Let your doctors know about the rheumatology case registry here with the COVID-19 Global Rheumatology Alliance. http://rheum-covid.org/
- Focus on the basics. Make the most of this time with your family and think about the things you want to help your children learn from this experience.
- Mask up. This behavior is shown to limit the spread of the disease and we can all work to normalize mask wearing.
- If you have medical appointments you can’t postpone, request a telehealth appointment. U.S. insurance benefits are being extended to apply to telehealth (phone or webcam) services.
- If you have an infusion appointment, plan with your physician how you can minimize contact with others: For example perhaps you can use a less traveled entrance, go in at a less busy time, sit in a separate room, and wear a cloth mask.
- Contact your physician now (many have messaging systems you can use) to set up a plan specific to you if you do get sick.
- The American College of Rheumatology is advocating forcefully for proper allocation of resources for patients, especially hydroxychloroquine and IL-1 and IL-6 and JAK antagonists. To track breaking news from ACR, click here. To see their updated clinical guidance on treating rheumatic diseases, click here.
- The COVID-19 “sitrep” page at the CDC: click here to check this frequently updated page including links to maps and key statistics.
- The FDA’s COVID-19 Q and A page answers over 60 questions on everything from pets to homemade hand sanitizer. Click here.There are also several other factsheets available there.
- 30 Days to Slow the Spread – Coronavirus Guidelines for America. Click here.
- Wear a cloth mask
- Hand washing
- Running errands safely