Rare disease expert Dr. Marshall Summar has given patients a checklist for being as self-sufficient as possible during the COVID-19 pandemic.
1. Plan on how you’ll get medical attention if you need it, Summar said. Know how to access telemedicine services. Check to see if your regular hospital is diverting non-COVID-19 patients elsewhere, so you know where to go if you urgently need treatment. It’s best to stay away from hospitals when you can right now. But rare disease patients sometimes can’t avoid them.
“You are a higher risk not treating your disease than you are at risk of getting COVID. If you need to go in, go in,” said Summar, chief of the Division of Genetics and Metabolism at Children’s National Health System and director of the Rare Disease Institute.
Summar, also board chairman for the National Organization for Rare Disorders (NORD), offered the advice during a recent webinar presented by NORD.
In addition to the hand-washing and social distancing that applies to everyone, people who live with rare diseases should take these steps:
2. Make sure treatment letters are up to date. (A treatment letter from a doctor, often used for travel, explains your condition on official stationery and can help quickly explain a rare disease to another health care provider.)
3. Have prescription refills on hand.
4. Create a hospital kit that includes your medications in case you must to go to the hospital for treatment. Remember the odds and ends, such as mobile phone chargers.
5. Have confidence in your ability to weather the pandemic. Families in the rare disease community prove their resilience on a daily basis.
“These are things we are used to dealing with,” Summar said. “We can be great teachers for the rest of the world.”
