Who's Equipped to Deal With Pandemic Worries? Patients With Rare Diseases, Some Say


Despite experiencing general fears, patients with rare diseases may be the most equipped to handle the coronavirus disease 2019 (COVID-19) pandemic, according to some experts.

Despite having the same anxieties everyone else has, the rare disease community may be the most equipped to handle challenges that have emerged from the coronavirus disease 2019 (COVID-19) pandemic, according to medical experts who spoke during a webinar about rare diseases and the public health crisis.

The webinar—“A Rare Response: Addressing the COVID-19 Pandemic”—was presented by the National Organization of Rare Disorders (NORD). It focused on the best ways patients with rare diseases can both keep safe and positive during the crisis as well as how they can help others.

“We actually have a lot of things to teach everyone else about how to deal with health uncertainty, how to deal with risk, how to deal with an uncertain future. So, in some ways, we can actually be great teachers for the rest of the world,” said Marshall Summar, MD, chief of genetics and metabolism at Children’s National Hospital and Director of the Rare Disease Institute.

Patients with rare diseases often experience hospitalization, periods of forced isolation, fears about health concerns, and regularly take precautions to avoid sickness, making them possibly the most capable in handling the fears and uncertainty associated with a pandemic.

“We know how to adapt. We are resourceful, we're creative, we're resilient, we're hopeful, and we know how to face complicated challenges,” said speaker Albert Freedman, PhD, a psychologist and the parent of a child with a rare disease.

Patients with rare diseases already know how to deal with fears regarding what could happen if precautions aren’t taken. “If you're armed with knowledge about what to expect and what's going on, I think that can mitigate, in many respects, the fears that we all feel,” noted speaker Bernhard Wiedermann, MD, MA, an infectious disease specialist at Children’s National Hospital.

The experts talked about how being as self-sufficient as possible can assist healthcare systems. Some ways to do that are to make sure to prepare a hospital kit, keep a couple of prescription refills on hand, check with healthcare providers to come up with a management plan, and take advantage of telehealth services.

In urban areas, volumes of coronavirus cases are high enough that certain hospitals have been designated as specifically for those cases. Webinar speakers urged patients to plan ahead and to check to see which hospitals in their area they should go to in the event they need non-coronavirus related medical assistance.

Additionally, when dealing with medical personnel, Summar advised that “a little dollop of patience and kindness is something we all want to extend to them because a lot of them are encountering things they may not have before.”

Freedman also advised devising a plan to help protect caregivers for patients with rare diseases. “It's important to put precautions in place to reduce risks to you and to your caregivers. You will feel more in control if you're clear about what you expect, and the caregiver will feel more in control if they feel protected as well.”

Freedman elaborated on ways to quell anxieties and fears that patients may still have. He suggested making lists of desirable and necessary tasks and making a schedule for them to establish a routine.

“If we keep to a familiar routine, it'll help us feel more comfortable and help us feel more in control. The routines you have may be different than the routines you used to follow but staying consistent with how we plan and manage will help,” he said.

In addition to maintaining healthy eating patterns, nutrition, getting enough sleep, and staying connected to friends and family, Freedman also suggested taking time out of the day to relax and escape stressors for a while, whether that means limiting exposure to the news, reading a book, or watching a mindless television show.

“We have the control also, to pay attention to our minds and our bodies, with meditation, relaxation exercises, and thinking exercises based on…cognitive behavioral therapy,” he noted.

Wiedermann and Freedman both advocated for taking walks to clear the mind and help with mental health issues as long as patients stay 6 feet away from other individuals, avoid gathering areas like public parks, and wash hands when they return home.

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