'They're Not Actually Getting Better,' Says Founder Of COVID-19 Long-Haulers Support Group
President Trump knew in February that the coronavirus was deadly and worse than the flu, even though publicly he downplayed the virus’ severity, according to journalist Bob Woodward’s new book.
One suburban mom has been trying to tell people how serious this pandemic is since March. Diana Berrent is a COVID-19 long-hauler, which is a person who suffers from debilitating medical issues even after their tests show they no longer carry the coronavirus.
Berrent is still battling symptoms nearly seven months after experiencing her most severe illnesses with COVID-19. She says she’s seen specialist after specialist for complications with her eyesight, gastrointestinal tract and recurring headaches.
She recently received shocking news from the eye doctor who told her she has borderline glaucoma, a condition that can cause blindness.
“I had actually just gone to the eye doctor in January and the pressure levels were totally normal then — and here we are,” she says.
Berrent realized early on that there were other long-haulers like her — a third of people who’ve had the coronavirus but were not sick enough to be hospitalized are enduring long-term effects, the Centers for Disease Control and Prevention reports. So she formed the online group Survivor Corps, where members document their symptoms, donate plasma, raise money for treatment and research, and provide support.
After hearing stories from the 100,000 members in Survivor Corps, she considers herself one of the lucky ones. Partnered with Indiana University, the group conducted a survey of symptoms and found members reported 98 different ailments from COVID-19 — that’s eight times more symptoms than what the CDC has listed.
Because the coronavirus is a vascular disease, she says Survivor Corps members are experiencing “damage to almost every organ system.”
Respiratory issues are the most common long-term symptom of long-haulers in the group, she says, and a “very concerning degree of neurological issues,” such as persistent, “soul-crushing headaches” that leave people unable to do daily activities.
Other post-COVID-19 illnesses include the onset of diabetes, lupus, inflammation of joints, skin issues and tachycardia, a heart condition that can lead to strokes or heart attacks, she says.
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.
“They are being told to stay at home under no medical supervision with Tylenol and Gatorade and to only seek medical help if they truly cannot breathe and need to be admitted to the emergency room,” she says. “I mean, this is the first time in any of our collective experiences where you would get sick, dramatically so, and be told to not go to the doctor.”
As she’s seen from the Survivor Corps group and from her own experience, the “public health crisis” induced by the coronavirus have been far-reaching on the body and mind, 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.
Berrent is now a patient Mount Sinai’s Center for Post-COVID Care, which provides medical attention and assistance specifically for coronavirus survivors. It’s the type of center that needs to be replicated everywhere, she says.
First and foremost, the Mt. Sinai’s coronavirus recovery facility takes survivors’ suffering seriously, she says.
“Many of our members are complaining that they [are] being gaslit by their doctors. They’re going in with severe medical conditions and they’re being told that they’re having an anxiety attack,” she says. “Yeah, they probably are having anxiety, but they’re also having tachycardia and they need to be treated medically and taken seriously.”
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.
The corps is also organizing plasma donations, since a coronavirus survivor’s blood contains antibodies. While the verdict is still out on how effective their antibody-abound plasma is as a COVID-19 treatment, it’s still important for medical professionals to have access to it.
“Our mission has actually remained the same since the day I started Survivor Corps while I was in isolation in my bedroom with COVID,” she says, “and that is to mobilize an army of COVID survivors to donate their plasma and to support science in every way possible.”
To Berrent, supporting science means that survivors, if they are able, should try to give back in any way they can.
“This virus is a mystery, but the answers to that mystery lie in the bodies of survivors,” she says. “It is a moral imperative to engage in every single scientific research study for which we qualify.”
Ultimately, the corps gives people who are experiencing chronic post-coronavirus symptoms or relapses a place to connect after experiencing the virus. And since most of them are long-haulers, membership hasn’t dwindled in size since Berrent created the group in March.
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.
“I will say, on a positive note, that Survivor Corps is really an extraordinary virtual place,” she says. “It is the most civil, supportive, caring community that exists among 100,000 strangers in America right now.”
Berrent has one thing to say to those who think the coronavirus is a hoax: Just stop by the Survivor Corps website for evidence.
“People ask me all the time, what do I tell, you know, my uncle who thinks it’s a hoax?” she says. “And the answer is very simple: Come on over to Survivor Corps and read these stories — and I promise he’ll change his mind.”
Are you a COVID-19 long-hauler? Let us know in the comments below.
This article was originally published on WBUR.org.
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