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Those with weakened immune systems take social distancing to an extreme

Evelyn Lebel walked with her fiance, Chris Stepanek, on the beach near her parent's house on Plum Island. Lebel suffers from a rare liver disease that makes her more susceptible to viruses. She has managed the disease by getting regular blood tests and MRI scans, but when she learned about the dangers of the coronavirus, it became clear that she would have to isolate herself quickly.
Evelyn Lebel walked with her fiance, Chris Stepanek, on the beach near her parent's house on Plum Island. Lebel suffers from a rare liver disease that makes her more susceptible to viruses. She has managed the disease by getting regular blood tests and MRI scans, but when she learned about the dangers of the coronavirus, it became clear that she would have to isolate herself quickly.Erin Clark/Globe Staff

A few minutes after dropping her daughter off at Sharon High School earlier this month, Darcy Daniels got a panicked call from the 16-year-old sophomore. A school official had just announced that a teacher’s spouse had tested positive for the coronavirus.

Daniels raced back to the school, where her daughter Wendy Wooden was waiting alone in the parking lot.

Daniels knew the infectious disease posed a grave threat to her daughter, who has had a compromised immune system since contracting E. coli as a toddler. Over the years, Wooden has been hospitalized dozens of times and survives on immunosuppressive drugs, insulin, and blood pressure medication.

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For Wooden and millions of other Americans with similarly compromised immune systems, such an illness as COVID-19 could be lethal.

“It’s terrifying,” said Daniels, 44, who had to leave her job teaching history at a middle school in Foxborough for fear of bringing home the virus. “I realized we weren’t as prepared or safe as we could have been.”

So Daniels and her husband made a quick decision: Rather than just staying away from friends and neighbors, they would take it to another level, what they and others have been calling “extreme social distancing.”

Darcy Daniels with her daughters Wendy Wooden, 16, and Penny, 10. Last week, Daniels brought them to their grandparents' vacant house in northern Vermont, in an effort to evade the virus.
Darcy Daniels with her daughters Wendy Wooden, 16, and Penny, 10. Last week, Daniels brought them to their grandparents' vacant house in northern Vermont, in an effort to evade the virus. Darcy Daniels

Three days later, packing a week’s worth of clothing, puzzles, yoga mats, a trumpet, and a soccer ball, Daniels, Wooden, and her other daughter, Penny, drove three and a half hours — without stopping — to her parents’ vacant house in northern Vermont, where they intend to stay until it seems safe to return home. Daniels’s husband, who had to stay behind for work, plans to join them soon.

“We’re doing the best we can with what we have,” Daniels said. “We’re hoping to be able to hold out until there’s a vaccine or treatment.”

It’s unclear how many Americans are similarly vulnerable to the virus, but more than 24 million — about 7 percent of the US population — suffer from an autoimmune disease, a condition in which a person’s immune system essentially malfunctions and attacks healthy cells, according to the National Institute of Environmental Health Sciences. An additional 8 million people have something called auto-antibodies in their blood, indicating they could develop an autoimmune disease.

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Among them is Evelyn Lebel, 27, who suffers from a rare liver disease that makes her more susceptible to viruses. She has managed the disease by getting regular blood tests and MRI scans, but when she learned about the dangers of the coronavirus, she quickly realized she would have to isolate herself.

On Monday, Lebel and her fiancé packed what they could, rented a car in Manhattan, which they wiped down with Clorox, and drove straight to her family’s beach house on Plum Island.

Lebel said she has no idea how long they’ll remain there. For now, she’s only leaving the house to take walks on the beach when no one else is around. Her fiancé has been doing the grocery shopping. When he returns, he uses his elbow to touch everything, and wipes down anything he touches. Then he changes his clothes and washes himself thoroughly.

“We’re taking the best precautions we can,” she said.

Lebel has grown frustrated seeing reports of people still congregating in large numbers and friends continuing to have dinner parties.

“It boggles my mind,” she said. “I don’t have that luxury.”

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A self-described extrovert whose job requires touching a lot of other people — she dresses actors backstage on Broadway —she has found the isolation to be increasingly trying.

“It’s brutal,” she said. “I’m so bored it feels like I’m slowly dying.”

Brittania Powell, who suffers from lupus, an autoimmune disease, is feeling trapped but without a way to use extreme distancing. Without the luxury of another home to escape to, the 20-year-old student has spent the past week confined to her family’s house in Columbus, Ohio. The community college where she was studying to become a dentist has been closed, and she now spends her time managing her anxiety by meditating, doing breathing exercises, and cleaning every surface of her house with antibacterial wipes.

“I could take all the vitamins in the world, but if someone coughs near me, I’ll get sick,” she said.

Powell’s parents are still working, and when they return home, they immediately put their clothes in the laundry and take a shower.

“At first, this didn’t feel real,” she said. “Now it does.”

Public health specialists say it remains unclear how long such social distancing will be required, but it could last for months. They say it could take 18 months to create an effective vaccine or treatments that ameliorate the effects of the virus.

Davidson Hamer, a professor of global health and medicine at the Boston University School of Public Health, said it will remain particularly important for those with compromised immune systems to isolate themselves until such protections become available.

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“They have a higher risk of dying, so they must be more cautious,” he said.

Wendy Wooden, 16, of Sharon, and her sister, Penny, 10, near their grandparents' vacant house in northern Vermont.
Wendy Wooden, 16, of Sharon, and her sister, Penny, 10, near their grandparents' vacant house in northern Vermont.Darcy Daniels

Amita Sharma, a pediatric kidney doctor who has treated Wendy Wooden since she was 3 years old, said she has advised her patients to stay away from hospitals as long as they can.

“We just don’t want them anywhere near infected people,” she said.

For Wooden, who has been growing antsy in the isolation of northern Vermont, that means a lot more board games and puzzles.

“I don’t like having to stay here for months, but if it keeps me safe, I’m OK with it,” she said.


David Abel can be reached at david.abel@globe.com. Follow him on Twitter @davabel.