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As some move on from the pandemic, people with long COVID feel frustrated and alone

JUANA SUMMERS, HOST:

To California, which recently ended its COVID emergency. The world in general seems to be moving on from the pandemic, but millions of people still suffer from lingering complications. LAist reporter Jackie Fortier found deep frustration growing among people with long COVID during his State of the Union address.

JACKIE FORTIER, BYLINE: President Biden said the U.S. is recovering from the pandemic.

(SOUNDBITE OF STATE OF THE UNION ADDRESS)

PRESIDENT JOE BIDEN: Today, COVID no longer controls our lives.

SHELBY HEDGECOCK: Hearing that is extremely disappointing and infuriating.

FORTIER: Shelby Hedgecock is one of the estimated 15 million adults in the U.S. who are currently suffering from long COVID. With the federal health emergency ending in May and masks often considered a thing of the past, Hedgecock says people with long COVID feel like they are on their own.

HEDGECOCK: We were injured by this virus. And so patients are losing hope. We feel swept under the rug.

FORTIER: People with long COVID are no longer contagious, but health issues related to their infection stretch on and on. It's linked to a kaleidoscope of more than 200 symptoms, says Dr. Linda Geng, co-director of the Stanford long COVID clinic.

LINDA GEND: It is a complex, likely multi-system condition of manifestations that persist after COVID infection, and it can be quite debilitating.

FORTIER: It's not yet known why some people develop long COVID and others don't, says Dr. Alice Perlowski. She's a long COVID patient and a cardiologist in LA.

ALICE PERLOWSKI: There is not one specific test that can particularly identify it. I wouldn't assume that you can't get long COVID because you had COVID a couple of times and were fine.

FORTIER: The severity and duration of long COVID varies. And there's some research suggesting that antivirals may cut the risk of developing long COVID if you're newly infected. Some people recover in a few weeks, while a smaller number have debilitating and lingering health issues. Shelby Hedgecock's COVID infection left her struggling to breathe at night. For months, her brain didn't get enough oxygen. She was unable to read for 19 months.

HEDGECOCK: It was like there was a disconnect between the words and my brain.

FORTIER: Before the spring of 2020, when she got infected, Hedgecock's life revolved around fitness. She worked as a personal trainer in LA. On the weekends, she competed in endurance races. Now she doesn't leave her apartment without a medical alert button that can instantly call an ambulance.

HEDGECOCK: I've passed out in the shower before. I've passed out alone at home before.

FORTIER: Hedgecock moved from LA back home to live with her family in Tennessee because she can't be alone.

HEDGECOCK: It's hard. I've never dealt with anything like this before COVID, and it's been life changing.

FORTIER: For other patients, long COVID has damaged family relationships. Julia Landis says her extended family doesn't believe her condition is a serious illness.

JULIA LANDIS: If this were cancer, I'd be living with family, I'm sure of it.

FORTIER: Landis is one of an estimated 3.8 million adults in the U.S. who currently have long COVID so severe it impacts their daily lives.

LANDIS: That's been the hardest part is not really feeling like anybody really cares in the family.

FORTIER: Many long COVID patients feel dismissed by doctors. Linda Rosenthal asked that staff wear masks during her visits to her Orange County cardiologist's office. If she gets COVID again, she could end up in the hospital. Days later, she received a letter. The cardiologist was no longer willing to be her doctor.

LINDA ROSENTHAL: It just throws, like, just another thing in your path that makes it more difficult to get the care that I deserve.

FORTIER: While she starts over again in Tennessee, Shelby Hedgecock has a team of specialists helping her slowly improve. She feels lucky. She's met people online in long COVID groups who are unable to work.

HEDGECOCK: A lot of them have lost their life savings. You know, some are experiencing homelessness.

FORTIER: She's worried that while researchers are looking for a treatment or cure, politicians will forget about people with long COVID struggling to live a normal life. For NPR News, I'm Jackie Fortier in Los Angeles.

SUMMERS: The story came from NPR's partnership with LAist and KFF Health News. Transcript provided by NPR, Copyright NPR.

NPR transcripts are created on a rush deadline by an NPR contractor. This text may not be in its final form and may be updated or revised in the future. Accuracy and availability may vary. The authoritative record of NPR’s programming is the audio record.

Jackie Fortier

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