“I started Survivor Corps on March 24, right here,” said Diana Berrent, while standing in the bedroom of her Port Washington home.
“I was in isolation with the same mission that we have today, which is to mobilize an army of survivors to support science,” she said.
At that time, Berrent was recovering from COVID-19 and wanted to inspire other survivors to donate plasma, which may help those with a severe form of the disease to fight the virus.
“I realized, if one person has the capacity to save lives, to save 3 to 4 lives with a single plasma donation, imagine what a whole coalition could do,” Berrent said.
Eight months later, she says the group is changing the paradigm of health care research.
Born and raised in New York City, and now living in Port Washington, Long Island, Berrent put her career as a globetrotting photographer on hold for Survivor Corps.
Documenting her donation of plasma came naturally. It also helped create a social media following.
Survivor Corps' Facebook group now boasts more than 115,000 members. It’s a place where survivors connect with each other and learn about Berrent’s livestream chats with healthcare experts.
The group is also becoming a resource for researchers.
As she stared into her computer, Berrent said 5,630 people responded to a recent Survivor Corps survey about symptoms. “In the COVID world, that’s beyond extraordinary,” she said.
Many in this community, like Berrent, were never hospitalized. But many experience long-term symptoms, like persistent headaches, ear and eye pain, and fatigue. Now, Berrent is on a mission to demand more research around long-term COVID-19.
She's already conferred with Dr. Anthony Fauci, the nation’s top infectious disease expert. One of the issues she raised during the livestreamed conversation is the lack of an official name for lingering COVID-19 symptoms, which has fluctuated from “long COVID” to “long-term COVID” and “long-hauler symptoms.”
“To paraphrase T.S. Eliot, the naming of the disease is a delicate matter. It’s hard to be taken seriously to get a billing code, etc. without a name. You named AIDS. Can we get a name for this?” Berrent asked Fauci on the livestream.
“We are going to have a workshop in December, and we can ask some of the investigators what their thoughts are, but you’re right, it’s important to have an appropriate name so that it’s taken seriously as an entity,” Fauci replied.
With the attention of health care leaders and the backing of a growing community, Berrent says she feels the power and responsibility of the platform she’s created.
“I’m in a unique position where I can actually effect change and that is extraordinary," she says. "And I will take that and take it as far as I can go, because we have no choice.”