One morning in March 2020, Terez Giuliana sat down to write an email to her daughter. In the subject line she wrote: “If I die.”
Giuliana, 65, of Philadelphia, suffers from a Common Variable Immune Deficiency, a disorder characterized by an inability to produce antibodies, sometimes even after receiving vaccines, leaving those with it very vulnerable to infections.
The Covid-19 represented an extraordinary threat to his health. As the virus began to spread in the United States, Giuliana felt the need to get her own house in order – just in case.
In her email, she typed in all of her passwords, detailed who she wanted her jewelry to be assigned to, and decided who should take care of her cats if she were to die.
A few days later, she quit the job she loved as a homeless outreach worker in the busy Reading Terminal market in Philadelphia to minimize contact with other people, and made a pact. with her husband to do whatever it takes to stay safe.
Age and underlying condition were a ‘double blow’ for Colin Powell
That meant not seeing friends inside or going to the movies, activities most people gave up in 2020, but which Giuliana had to keep giving up this year even after being fully vaccinated.
Indeed, no doctor can guarantee that his vaccines offer him adequate levels of protection against the coronavirus.
âNothing has changed for me,â said Giuliana. “I don’t like it, and not being able to work breaks my heart, but I’m not good for anyone if I’m dead.”
For many people with weakened immune systems, vaccines have not offered the same level of relief and return to normalcy as for those without underlying health conditions.
Some, like Giuliana, don’t know how well the vaccine protects them because people with compromised immunity have not been included in clinical trials. Others, due to their medical condition, are at a higher risk of complications if they contract the coronavirus. Some fall into both categories.
Teresa M. Stallone, 46, of Chicago, suffers from psoriatic arthritis, a painful autoimmune disease affecting the skin, joints and other areas. For her, the uncertainty of whether her vaccines have had the desired effect is difficult, but more frustrating is the lack of courtesy she encounters in places like the grocery store.
âWhen I see people walking in without a mask, I really try to stay away from them,â she said. âThe neglect of some people, not realizing how much it can affect others, is infuriating. “
âThe neglect of some people, not realizing how much it can affect others, is infuriating. “
Being immunocompromised during a pandemic can also be isolating. Jemela Williams, 40, of Kansas City, Missouri, suffers from sickle cell anemia, a genetic disease of red blood cells in which a lack of oxygen flow causes pain and organ damage.
When those around her were vaccinated, many began to take back what they had put on hold during the pandemic – while Williams felt the need to continue living much like she did before the vaccines were released. available. She has barely seen her best friend face to face yet and does not know when she will feel comfortable traveling again.
âOf course, I don’t blame people for having fun,â she said. âBut it’s incredibly frustrating because you’re kind of left behind. And it feels like not everyone takes things as seriously as you do.
“No one has ever experienced this”
A wide range of conditions can lead to weakened immunity, including cancers, inherited genetic defects, and immunosuppressive drugs taken after organ transplants or for other conditions. Moderately to severely immunocompromised people make up 3% of the adult population, according to the Centers for Disease Control and Prevention.
In August, the Food and Drug Administration authorized the use of a third dose of Covid vaccines in some immunocompromised people, believing they were at risk of serious illness.
While there are tests that measure antibody levels after vaccinations, experts say it’s too early to know exactly what levels are needed for full protection.
And if they are protected, it is not known how long that protection will last. It’s a question that comes up frequently among people with primary immunodeficiencies, a group of more than 400 rare chronic disorders in which the body’s immune system is absent or malfunctioning, according to Kathy Antilla, vice president of education. for the Immune Deficiency Foundation, a non-profit organization advocating for the primary immunodeficiency community.
âNo one around the world has ever experienced this, let alone in our rare disease community. It’s a challenge all around, âshe said.
The best hope, experts say, is to surround the most vulnerable members of society with fully vaccinated individuals so that the virus does not have a chance to seek them out.
“What if the person in the store next to you has rheumatoid arthritis or has had a kidney transplant, what if you kill them?” Said Dr. David Thomas, director of infectious diseases at Johns Hopkins Medicine. âBy getting vaccinated and wearing a mask, you are doing a lot to help people whose immune systems cannot respond to the vaccine. “
But some immunocompromised people have found that by taking such precautions themselves, they stand out.
Jessica Jacobs, 29, a producer and writer in Los Angeles who suffers from rheumatoid arthritis, was self-employed during the summer as the delta variant began to spread. Masks were optional for those who were fully immunized, and she was the only one in her office area wearing one.
âA colleague at the time said, ‘I didn’t know if you were vaccinated or not,’ which is the biggest insult possible, because I can’t even be with unvaccinated people,â he said. she declared.
How to show support
Friends, family and institutions can help vulnerable people in different ways.
“It shed light on what’s possible, whether it’s working from home or taking online classes,” Stallone said, adding that she hoped these accommodations would be extended beyond the pandemic. . âEven the stores on special hours did – my doctor wrote a note for me allowing me to shop with the elderly because I am immunocompromised. “
The anxiety at this point in the pandemic is still very real and very justified for many people with compromised immunity, Antilla said, encouraging those around them not to put pressure on them.
âIf you’re with someone who says, ‘I have this diagnosis, I don’t feel safe doing A, B, C or D’, please support them. You don’t have to understand. Just show solidarity, âshe said.
Jacobs echoed this.
“I would rather someone ask me a billion ignorant questions than not care and put me and my family in danger,” she said.
“I would rather someone ask me a billion ignorant questions rather than ignore them and put me and my family in danger.”
Support networks can be essential, others said. While not everyone in her life understands what she is going through, Williams has found solace in an online sickle cell support group. Before the pandemic, the group met weekly at a local hospital, but now meets on Zoom – which means it attracts members from as far away as Africa and London.
âWe have just formed such a family,â she said. “As soon as the numbers go down or something improves, we look forward to meeting and kissing.”
Giuliana has felt the most supported by those who come to terms with what she calls her “calculated risks” since getting the vaccine.
Although she had to give up her job of helping the homeless, she accepted a volunteer position serving al fresco meals to those in need. Although she cannot participate in indoor gatherings, she visits the outdoors in masks with her grandnieces and grandnephews who are too young to be vaccinated.
She doesn’t know when, if ever, she’ll feel completely safe again. But in the meantime, she says, she shows appreciation for those around her who help her stay healthy.
âCovid made me realize how vulnerable I am, and not just to Covid, but to everything,â she said. âI thank people for wearing masks all the time. “