How can rare disease patients and caregivers prepare for coronavirus and a strained healthcare system?

UpdatedMarch 12, 2020

People who are already managing existing health conditions may need to take some extra precautions and make plans to keep their care consistent.

By Catherine Cooke Covid-19

This week has been a rollercoaster of health-related news, as COVID-19 (or “coronavirus”) has changed day-to-day life for many communities around the world.

We have seen major events such as March Madness and Coachella preventatively cancelled or postponed. International attractions like the Venice canals and Tiananmen Square are now virtually abandoned, as cities and countries have mandated quarantines. Many universities are holding classes online for the rest of the semester.

When we see the photos and hear the stories in the news, it can be alarming. But take heart. For most individuals, early data shows that most cases of coronavirus are not severe. However, elderly and immunocompromised individuals need to take the most care.

For our rare disease community, some fall into this category of needing to take extra precautions, and many will need to prepare for how to meet their other health needs while the care system is focused on coronavirus. Public health experts are urging all of us not to panic, but to take proactive steps like the ones below to prepare ourselves and our families.

Ways to prepare for this time of uncertainty:

  • Make a plan to stay stocked with your regular medications. Ask your provider if you can get extra necessary medications for yourself or the person you care for. This will cover your bases in case you need to stay at home for an extended period of time. Some pharmacies are making plans to deliver medications to their customers for free, so check with your local pharmacy to see if delivery of refills is an option for you.
  • Talk to your doctor about managing your condition during this time (and take notes!) Discuss with your provider if and how you should alter any appointment plans, and if there are relevant remote telemedicine options for you or the person you care for. Ask them if there is any information you should highlight to other doctors about your condition should you start to experience coronavirus symptoms as well. Take notes and keep these handy with your medical records should you need them in the coming months.

  • Remind others that you are at high risk. You are most likely to contract the virus from those you see the most. Remind your family, neighbors, coworkers, religious community, and anyone else you regularly come in contact with about your underlying health conditions. We often talk about how many chronic conditions aren’t visible to others, and this is a moment where we need to take charge to remind others what we are up against. While some people are not worried about themselves falling ill, they could use a reminder that the virus may have more serious effects if they pass it onto you.

  • Wash your hands, often, for at least 20 seconds. We know, you’ve heard this a lot, but it’s the number one way to ward off germs! Are you tired of singing Happy Birthday twice? Check out This fun site will pair the lyrics of your favorite tunes to hand washing steps, so you can get a little more enjoyment out of this ritual! How about “Happy” by Pharrell to put a smile on your face?

  • Avoid unnecessary travel and large gatherings. This one is frustrating. It’s never fun to skip out on events you were looking forward to. Many cities have forced this, cancelling gatherings of 200 people or more as preventative measures. The good news? You’ll have an excuse to binge watch something on Netflix or pick up a good book. If you’ve had to cancel a trip, we suggest “Ugly Delicious,” a Netflix docu-series that chronicles food and culture across the U.S. and abroad. Or be inspired with Chasing My Cure: A Doctor’s Race to Turn Hope into Action by David Fajgenbaum.

  • Clean high-touch surfaces every day. This might be the most cleaning action your counters, tabletops, doorknobs, bathroom fixtures, toilets, phones, keyboards, tablets, and bedside tables have ever seen. Use cleaning products certified to disinfect surfaces, and follow instructions on how to use them. The EPA has a resource on which disinfectants work against SARS-CoV-2, the coronavirus that causes COVID-19.

  • Stock up on essential supplies. One quick reminder: the world is not ending. Only take what you need. Stores are still restocking, so please do not take more than one month’s worth of essential items. Remember what our mothers told us that “sharing is caring,” and leave enough for others instead of buying out stores. This includes unperishable food, soap, toilet paper, cleaning products, and essential toiletries. While you’re at it, you may want to get some arts and crafts activities for your children in case their schools are closed.

Notice face masks are not on this list? Contrary to popular belief, face masks do very little to prevent you from getting sick, as they are designed to prevent droplets from getting out but not for preventing germs from entering. Face masks are helpful to wear if you are already sick to prevent spreading the virus further. However, they are not necessary, and you should not be worried if they are unavailable in stores.

What to do if you think you have coronavirus

  • Double check the symptoms. The symptoms of COVID-19 are coughing, high fever, and shortness of breath. Have a runny nose and sore throat? You likely just have a common cold, but continue to monitor your symptoms.

  • Call your doctor. Before going to a hospital, call your doctor who will advise you on next steps to test for COVID-19. You should avoid going to medical facilities to prevent spreading the disease further (and to prevent additional exposure for yourself to other potentially sick patients).

  • Stay at home, if you can, and quarantine yourself. Contain the virus. If you live with others, keep to one designated room and bathroom until you receive instructions from your doctor about what to do next. The rest of the household should avoid entering the quarantined zone. All surfaces of your home should be thoroughly wiped down with a proper disinfectant.

Things are changing daily, so make sure to stay up to date on the latest information. While social media may keep you laughing with coronavirus memes to lighten the mood, be sure to only take your news from credible sources. You might want to fact-check your neighbor’s tweet. Some of the best places to receive up-to-date advice are the Centers for Disease Control and Prevention (CDC) and the World Health Organization (WHO).

We know it can be alarming in this time of uncertainty and every-changing numbers, but remember that there are actionable steps you can take to prevent and manage COVID-19 and to prepare yourself for a period of time at home. Now go wash your hands (we are too)!

Originally posted at March 12, 2020

Back to blog