For many immunocompromised people, social distancing isn’t a new endeavor. Alpha-1 Antitrypsin Deficiency is sometimes called an “invisible disability”. This is one of these times where is so important for society to help “flatten the curve” and protect those that are at a higher risk.
A 27- year old Alpha shares her story with NBCnews.com about being an Alpha and helps start a movement for those at higher risk. #HighRiskCovid19
As a self-described extrovert, Evelyn Lebel says she finds social distancing difficult. But as a 27-year-old woman with Alpha-1 antitrypsin deficiency, a genetic disorder that can result in lung and liver complications, she knows self-quarantine is necessary.
Yet even as bars, schools, places of worship and other seemingly formidable establishments like Broadway closed down in the past few days amid the spread of the coronavirus, some young people ignored warnings to “flatten the curve” — instead opting to gather with friends in crowded locales for boozy brunches as if it were any other weekend.
As posts deriding these young people as “selfish” began populating online, so did a trending movement, #HighRiskCovid19, whereby their immunocompromised peers, like Lebel, are sharing their stories to bring greater awareness to those under 60 years old with ailments that make them more vulnerable to the coronavirus.
“People my age aren’t really thinking about just how many people they are putting in potential danger by continuing to go out,” Lebel told NBC News. “Think about your grandparents and your parents, but also think about your friends your age. Some of us may look healthy on the outside but could be dealing with underlying health conditions.”
For many immunocompromised people, social distancing isn’t a new endeavor, which is why they empathize with those who want to go out with friends. However, they also see their peers’ inability to give up gathering in packed establishments as “hurtful.”
“It’s hard to know that there are people who aren’t taking this seriously,” said Brittania Powell, 20, who has lupus nephritis, an autoimmune disease that causes the body’s immune system to target its own tissues. “We’re struggling every day trying to live half the live you are living, and then there are people on Instagram and Snapchat still going out, not paying attention to the fact that they are hurting others.”
Leah Fugate, 19, who is waiting for a pulmonary valve replacement, said it “sucks to be mean” and tell people who continue to go about their everyday activities that she can’t be around them, but for her, getting the coronavirus would be a “matter of life and death.”
“I’m trying to educate my friends about how serious this is,” Fugate said. “I’m not only trying to protect myself, but I’m trying to protect them.”
Fugate, who has been practicing social distancing for several months ahead of her anticipated operation, said she understands the temptation to go out with friends. She, too, has grown restless being in the house, but she says reading stories from others using #HighRiskCovid19 has shown her she’s not alone, and it has brought her solace.
She was supposed to have surgery, with a synthetic valve placed through her leg, in a couple of months, but she said doctors are trying to speed the process as the coronavirus spreads and inevitably puts more demands on the national health care system.
According to medical experts, older adults appear to be more severely at risk from the new coronavirus; young people, children especially, have made up very few of the confirmed cases so far. Still, Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases, has said people with “underlying conditions“— regardless of age — are “overwhelmingly” more likely to have complications if they catch the coronavirus.
The National Institute of Environmental Health Sciences estimates that more than 24 million Americans of various ages suffer from an autoimmune disease. While it’s not just young people who are using #HighRiskCovid19 to share their stories, posters are using the movement to amplify the “invisible disabilities” that can afflict young people, including autoimmune disorders such as Crohn’s disease, diabetes, arthritis and lupus.
“Before being diagnosed with lupus, I was sick for quite some time and self-isolated for about two years because my immune system was so weak,” said Bakhtawar Saeed, 25. “I only went out to go to doctor’s visits, so to see that coronavirus has also been forcing people into quarantine and to slow down is strange, because that’s been my reality.”
That is why, Saeed said, she posted about taking immunosuppressants to protect her body from “attacking” her organs and urged her peers to stay home.
“Young people like to think of themselves as invincible, but we’re not, which is why, as a recently diagnosed young person, I wanted to show these silent, invisible illnesses can affect people of all ages,” Saeed said. “I hope this inspires people to pay attention and slow down, instead of rushing to the next thing.”
As of Monday, more than 3,500 coronavirus cases and 67 related deaths had been confirmed in the U.S.
Source: NBC News