'They're Not Actually Getting Better,' Says Founder Of COVID-19 Long-Haulers Support Group

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Survivor Corps is an online group for COVID-19 long-haulers to document their symptoms, raise money for treatment and research, and provide support. Founder Diana Berrent says she’s seen specialists for many of her complications. | hereandnow

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Because the coronavirus is a vascular disease, she says Survivor Corps members are experiencing “damage to almost every organ system.”

The U.S. is doing an “adequate job” of tracking infections, hospitalizations and deaths from the virus — but is not sufficiently tracking those who were sick with COVID-19 but never hospitalized, she says. To learn more about these impacts, Survivor Corps again joined with Indiana University to conduct a second “deep dive” report using the group’s data in order to tell a cohesive story about post-coronavirus effects, she says. Members are also advocating for post-COVID-19 care at hospitals across the U.S., which provides medical attention and assistance specifically for coronavirus survivors. It’s the type of center that needs to be replicated everywhere, she says.

It was a “phenomenal relief” for Berrent to be able to have a doctor sit down with her and really listen to every aspect of her post-coronavirus conditions, she says. To Berrent, supporting science means that survivors, if they are able, should try to give back in any way they can. Since quarantining at home or experiencing the effects of the coronavirus can be isolating and lonely, the need for community is stronger than ever, she says.

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