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The Long Haul: A Conversation With Diana Berrent

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Courtesy Diana Berrent
Diana Berrent with staff at Columbia Presbyterian

Diana Berrent lives on Long Island. She was diagnosed with COVID-19 in early March and was among the first group of Americans infected with the novel coronavirus. She fought off the infection at home, treating herself with Tylenol and Gatorade.

After 18 days in self isolation, she was fine, she thought.

Turns out, like many people infected with COVID-19, she’s a long-hauler.

A long-hauler is someone who continues to suffer health problems related to COVID-19 long after the initial infection has subsided. Dr. Anthony Fauci, director of the National Institute of Allergies and Infectious Diseases and a member of the federal Coronavirus Task Force, defined “long-hauler” recently at a senate committee hearing.

He said, “A number of individuals who virologically have recovered from infection, in fact have persistence measured in weeks to months of symptomatology that does not appear to be due to persistence of the virus.”

Dr. Fauci said COVID long-haulers often experience fatigue, myalgia, fever and neurological problems. They also can experience cognitive problems and struggle to concentrate.

Berrent suffers from COVID onset glaucoma.

Before she realized COVID-19 could be something that causes health problems in survivors for weeks or months, she started a Facebook group for people who have or have recovered from COVID-19, called Survivor Corps. Her goal was to encourage those who have recovered from the disease to donate plasma to help those who are fighting the disease.

Convalescent plasma therapy involves taking plasma from someone who has successfully fought off a disease — in the case COVID-19 — and injecting it into someone who is still sick. The plasma of the recovered patient is rich with antibodies to fight the disease and may boost the immune system of an infected person, possibly shortening the course and severity of their disease.

Berrent has donated plasma several times, but as weeks passed and membership in Survivor Corps grew, she noticed something. Not everyone was getting better.

“It's one thing to see one person, five people, 10 people,” Berrent said. “But when you see the numbers start to go up, you realize that you're looking at really relevant medical data that people need to be aware of.”

Now, eight months after the first case of COVID-19 was confirmed in the United States, thousands of people appear to be fighting with post-COVID symptoms. Berrent calls this long-term COVID.

“The CDC has said that one in three people are not recovering,” Berrent said. “Of those, one in five (are) young healthy people with no pre-existing conditions.”

Berrent fears that the growing numbers of people experiencing long-term COVID will lead to a secondary health care crisis that will last decades because it might involve children.

“We have no idea how this virus has affected our children,” Berrent said. “We don't know what the longterm impacts are. We're very cavalier about our children's health when it comes to this virus, just because they don't manifest significant symptoms.”

Despite her experience with long-term COVID, she said she feels extraordinarily lucky.

“The truth of it is, most people who are experiencing long-term COVID would not be able to do this interview with you right now,” Berrent said, “They wouldn't be able to sit here for 30 minutes and have a coherent conversation and have the attention span and the physical energy to sit here.”

“Showering is all some people can do,” Berrent said.