Lupus research identifies cause, giving hope to suffering Long Islanders
Jeanine and Ken Cox, of Central Islip, with Jessica Washington, left, of Bay Shore, on Wednesday. Side effects from treatments have been a concern for Washington and Jeanine Cox, who were both diagnosed with lupus in the 1990s. Credit: Newsday/Steve Pfost
Jeanine Cox felt something was amiss when her flu-like symptoms lingered. Aches progressed to swollen knees and elbows, and her hands ballooned so much that she couldn’t bend her fingers.
"I was having difficulty getting out of bed and walking," the Central Islip resident said.
After seeing multiple doctors, she was diagnosed in 1990 with lupus — a disease in which a person’s immune system attacks its tissue and cells, researchers said. The onslaught of the condition brings about inflammation and organ damage, among other effects, but some of the treatments today also bring serious side effects.
Researchers in a study published in the scientific journal Nature on July 10 said they found a cause for the disease. That could lead to a new therapy that doesn't have the same complications as existing treatments.
"Our only goal is to improve the therapy of patients" with lupus, said Dr. Jaehyuk Choi, a co-author of the study and a professor at Northwestern Medicine in Chicago..
Many of the current treatments for lupus are imprecise, Choi said in an interview.
"You're just trying to prevent the damage, so you just try to inhibit the immune system, but oftentimes you affect both the lupus-causing cells, but also the cells that protect you from bacteria, viruses, etc.," he said.
Cox, 59, takes immunosuppressant medication, the main treatment for the condition, according to the Centers for Disease Control and Prevention. But she still worries about side effects, which can make it tougher for the body to stave off infections, increase the risk of cancer, and cause organ damage, the Lupus Research Alliance said. She has stage four kidney disease and is on the organ transplant list.
Cox said the research is exciting, particularly after going through chemotherapy for lupus and taking different medications.
"I'm looking forward to having something that's more targeted," said Cox, who recently helped form a lupus support group.
Lupus remains a chronic condition that often takes years to pinpoint because symptoms can look different from person to person, and they can come and go, the CDC said. There’s also no single test to determine whether a person has the autoimmune disease.
Women are more likely to have the condition, researchers say. Lupus is also more likely to strike people of African descent and within other racial and ethnic minority communities, according to the CDC. Moreover, Black and Hispanic women are more likely to have lupus detected earlier and have more severe symptoms compared with white women, the CDC says.
In that environment, researchers sought to find out what molecules are responsible for the altered immune system in people living with lupus, said Choi, Northwestern Medicine associate professor of molecular genetics, dermatology and biochemistry.
To do that, the researchers compared the blood of people with the autoimmune disease to those without it.
The people with lupus had an increased number of certain disease-causing cells. They also had a decrease in Th22 cells, which help promote wound healing, researchers said.
In people who don’t have lupus, the phenomenon is the opposite, Choi said.
The study showed that a chemical imbalance influenced the cellular imbalance in those with lupus.
People with lupus have heightened levels of interferon, a natural substance that supports the immune system in its battle against infection and disease, the National Cancer Institute said. They then have lower levels of a protein called aryl hydrocarbon receptor, or AHR.
An inadequate amount of AHR can allow for the overflow of the disease-causing cells, researchers said. By activating the AHR, researchers said they can help treat the condition.
"We're hopeful that this therapy will reduce the damaging immune response and protect those organs from injury," Dr. Deepak Rao, a co-author of the study and a rheumatologist at Brigham and Women's Hospital in Boston, said in an interview.
Dr. Steven Carsons, chief of the rheumatology, allergy, and immunology division with the NYU Grossman Long Island School of Medicine, who wasn't part of the study, called the work "highly significant" because it could lead to new therapies.
Yet, he noted that the effectiveness of potential therapies is not entirely clear until they are administered to people.
For years since her lupus diagnosis in 1996, Jessica Washington managed her condition with a series of natural remedies in addition to medications used traditionally to treat people with lupus — cognizant of the damage that the latter treatment could do to her body.
"It was always a concern," she said, specifically citing heart, kidney and weight issues that can arise after taking some lupus treatments.
The idea of a potential new treatment option intrigued the Bay Shore resident.
"I'm excited because we need something new, and we need something that's targeted for us," she said.
But researchers are expressing caution, said Rao, who is also an associate professor of medicine at Harvard Medical School.
"How effective it's going to be, or how long it will last for, I think, are open questions we just don't know at this stage," he said.
Researchers in the study said developing new therapy could take a year or more. However, they said the study is a clear signal to people living with lupus.
"There are a number of people who are doing this kind of research who really care deeply about understanding this disease and trying to find better ways to treat it," Rao said.
Washington and Cox agreed it was heartening to know that people are pushing for progress. They plan to continue doing this with their MCW Lupus Group, which meets at the Bay Shore-Brightwaters Public Library every fourth Wednesday of the month.
There, a person with lupus or their loved one can have conversations about whether to join a research study or lifestyle changes that have been effective.
"There's still so much more to learn," Washington said.
Jeanine Cox felt something was amiss when her flu-like symptoms lingered. Aches progressed to swollen knees and elbows, and her hands ballooned so much that she couldn’t bend her fingers.
"I was having difficulty getting out of bed and walking," the Central Islip resident said.
After seeing multiple doctors, she was diagnosed in 1990 with lupus — a disease in which a person’s immune system attacks its tissue and cells, researchers said. The onslaught of the condition brings about inflammation and organ damage, among other effects, but some of the treatments today also bring serious side effects.
Researchers in a study published in the scientific journal Nature on July 10 said they found a cause for the disease. That could lead to a new therapy that doesn't have the same complications as existing treatments.
WHAT TO KNOW
- Lupus is a chronic disease in which a person’s immune system attacks its sound tissue and cells, researchers say.
Researchers said they found a cause for the disease. That could lead to a new therapy that doesn't have the same complications as existing treatments.
Researchers in the study hope that by switching the defect, they can provide a better therapy and eventually perhaps produce a cure.
"Our only goal is to improve the therapy of patients" with lupus, said Dr. Jaehyuk Choi, a co-author of the study and a professor at Northwestern Medicine in Chicago..
Many of the current treatments for lupus are imprecise, Choi said in an interview.
"You're just trying to prevent the damage, so you just try to inhibit the immune system, but oftentimes you affect both the lupus-causing cells, but also the cells that protect you from bacteria, viruses, etc.," he said.
Cox, 59, takes immunosuppressant medication, the main treatment for the condition, according to the Centers for Disease Control and Prevention. But she still worries about side effects, which can make it tougher for the body to stave off infections, increase the risk of cancer, and cause organ damage, the Lupus Research Alliance said. She has stage four kidney disease and is on the organ transplant list.
Cox said the research is exciting, particularly after going through chemotherapy for lupus and taking different medications.
"I'm looking forward to having something that's more targeted," said Cox, who recently helped form a lupus support group.
Lupus more common in women, racial and ethnic minorities
Lupus remains a chronic condition that often takes years to pinpoint because symptoms can look different from person to person, and they can come and go, the CDC said. There’s also no single test to determine whether a person has the autoimmune disease.
Women are more likely to have the condition, researchers say. Lupus is also more likely to strike people of African descent and within other racial and ethnic minority communities, according to the CDC. Moreover, Black and Hispanic women are more likely to have lupus detected earlier and have more severe symptoms compared with white women, the CDC says.
In that environment, researchers sought to find out what molecules are responsible for the altered immune system in people living with lupus, said Choi, Northwestern Medicine associate professor of molecular genetics, dermatology and biochemistry.
To do that, the researchers compared the blood of people with the autoimmune disease to those without it.
The people with lupus had an increased number of certain disease-causing cells. They also had a decrease in Th22 cells, which help promote wound healing, researchers said.
In people who don’t have lupus, the phenomenon is the opposite, Choi said.
The study showed that a chemical imbalance influenced the cellular imbalance in those with lupus.
People with lupus have heightened levels of interferon, a natural substance that supports the immune system in its battle against infection and disease, the National Cancer Institute said. They then have lower levels of a protein called aryl hydrocarbon receptor, or AHR.
An inadequate amount of AHR can allow for the overflow of the disease-causing cells, researchers said. By activating the AHR, researchers said they can help treat the condition.
"We're hopeful that this therapy will reduce the damaging immune response and protect those organs from injury," Dr. Deepak Rao, a co-author of the study and a rheumatologist at Brigham and Women's Hospital in Boston, said in an interview.
Dr. Steven Carsons, chief of the rheumatology, allergy, and immunology division with the NYU Grossman Long Island School of Medicine, who wasn't part of the study, called the work "highly significant" because it could lead to new therapies.
Yet, he noted that the effectiveness of potential therapies is not entirely clear until they are administered to people.
For years since her lupus diagnosis in 1996, Jessica Washington managed her condition with a series of natural remedies in addition to medications used traditionally to treat people with lupus — cognizant of the damage that the latter treatment could do to her body.
"It was always a concern," she said, specifically citing heart, kidney and weight issues that can arise after taking some lupus treatments.
The idea of a potential new treatment option intrigued the Bay Shore resident.
"I'm excited because we need something new, and we need something that's targeted for us," she said.
But researchers are expressing caution, said Rao, who is also an associate professor of medicine at Harvard Medical School.
"How effective it's going to be, or how long it will last for, I think, are open questions we just don't know at this stage," he said.
Researchers in the study said developing new therapy could take a year or more. However, they said the study is a clear signal to people living with lupus.
"There are a number of people who are doing this kind of research who really care deeply about understanding this disease and trying to find better ways to treat it," Rao said.
Washington and Cox agreed it was heartening to know that people are pushing for progress. They plan to continue doing this with their MCW Lupus Group, which meets at the Bay Shore-Brightwaters Public Library every fourth Wednesday of the month.
There, a person with lupus or their loved one can have conversations about whether to join a research study or lifestyle changes that have been effective.
"There's still so much more to learn," Washington said.
Education: Howard University
Tiffany Cusaac-Smith came to Newsday in 2023 after being a race and history reporter at USA TODAY, where she wrote enterprise and spot articles examining how the past shapes the present. Previously, she worked as the race and justice reporter at the USA TODAY Network of New York, covering issues such as criminal justice reform, housing, environmental justice, health care and politics. At The Journal News/lohud.com in Westchester County, she covered Yonkers, the state's third-largest city. She also worked at The Associated Press in Atlanta.
Honors and Awards: Criminal justice reporting fellowship with the National Press Foundation; New York News Publishers Association award for distinguished investigative reporting; Contributed reporting for Best of Gannett honor; Member of Table Stakes, a program funded by the Knight-Lenfest Local News Transformation Fund and managed by the American Press Institute to transform local news.
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