Members of the rare disease community may be more prepared than most to deal with the COVID-19 pandemic

People with rare diseases may be feeling more vulnerable than usual as the holidays approach. As people spend more time indoors, the number of COVID-19 cases continues to rise. But some experts say that those with rare conditions might have better-than-average coping skills in handling the changes brought by the global pandemic.

People who are immunosuppressed (including many in the rare disease community) are at greater risk of severe complications from COVID disease. Planning ahead can help you stay safer and feel less anxious in challenging situations. During a webinar organized by the National Organization of Rare Disorders (NORD), experts had a message for the rare community.

 “Most rare disease already comes with a greater risk in everyday life,” says Marshall Summar, MD, a clinical geneticist, rare disease specialist, and chairman of the NORD board of directors. “The rare disease community has dealt with risks for many years. Our folks have better-than-average coping skills.” 

Dr. Summar offers the following advice to help people with rare diseases safely navigate the holiday season:

Listen to and obey

Be mindful of Public announcements regarding social distancing, social separation, and self-quarantine.Many who are immunosuppressed are already familiar with the need to limit social contact at times, especially during cold and flu season.

Restock your essential medications.

“I’m not saying you should rush out and clear the shelves, but do make sure you’ve got a couple of refills on hand,” says Dr. Summar.

Check with your local hospital to see if they are diverting non-COVID-19 patients to other facilities.

“One thing we’re seeing in the hardest-hit areas is that certain hospitals are being designated for COVID-19 and certain hospitals for non-COVID-19,” Dr. Summar explains. If the non-COVID-19 facility near you is not your regular hospital, find out which healthcare providers at that facility are the ones you would most likely see in case of emergency. Ask how they can be put in touch with your regular healthcare providers.

Make sure any treatment letters pertinent to your condition are up to date. 

A key takeaway? Don’t panic—but do exercise an abundance of caution.  “You’ve dealt with things like this before. You know how to deal with them now,” notes Dr. Summar. “Stop, think, and plan.” 

To view the full webinar, visit NORD’s YouTube page.