Feinstein Institutes gets $15M grant to study brain dysfunction tied to lupus

Nicole Carfagna Rios finds herself searching for words, even when the item she is trying to describe is right in front of her.

“I know what I want to say — I’m looking at the refrigerator,” said Rios, 34, of Smithtown. “But I’m calling it the thing that makes everything cold. It’s frustrating."

Rios has lupus, an autoimmune disease that can affect a person’s skin, joints and internal organs. The disease also can cause cognitive dysfunction, sometimes known as “lupus fog,” when a person becomes temporarily confused or forgetful.

Feinstein Institutes for Medical Research, the Manhasset-based research arm of Northwell Health, has been awarded a $15 million grant from the National Institutes of Health to study brain dysfunction connected to lupus.

“I have my master's degree, and to be 34 and unable to work and unable to carry on a conversation sometimes is definitely one of the most frustrating things,” said Rios, a special education teacher who writes about her experiences in a blog called lifeintheloop.org.

The vast majority — 90% — of people living with lupus are women, according to the Lupus Foundation of America. It is two to three times more prevalent in women of color than white women.

Dr. Betty Diamond, director of Feinstein’s Institute of Molecular Medicine, has spent years studying DNA antibodies, the hallmark of lupus. She said the grant will help her and her team further examine how antibodies react with a specific neuron receptor in the brain that is critical for learning and memory, leading to cognitive impairment in some lupus patients.

“We found that antibodies in at least 30% to 40% of lupus patients might affect neuronal function,” she said. “And we've since gone on to show that these antibodies are present in cerebral spinal fluid of lupus patients with acute psychosis or acute confusional state.”

Stevan Gibson, president and CEO of the Lupus Foundation of America, called neuropsychiatric lupus “one of the most serious and devastating complications” of the disease.

“Symptoms can range from cognitive impairment and difficulty thinking to seizures and strokes,” he said in a statement.

Nikita Addison of Freeport, who was diagnosed with lupus 12 years ago at the age of 19, said she has struggled with cognitive issues on top of other physical symptoms.

“It could be moment to moment,” said Addison, 31, a senior coordinator at Altice. “Like, I'll completely forget what I'm supposed to be doing or lose my train of thought.”

Diamond said some studies have shown ACE inhibitors, commonly used to treat high blood pressure, stroke and heart attacks and more recently Alzheimer’s disease, can slow or reverse the memory loss and cognition issues.

“This is a grant to continue to try to understand mechanisms of the damage that we see in our laboratory model and in human patients, so that we can identify other potential therapeutic targets,” she said.

The study also will use lab models to examine whether these antibodies can be transferred in utero to offspring.

Diamond said there’s a history of medical literature about the increased risk of learning disabilities and autism in the children of mothers who have lupus.

Martha Chisholm, 37, has dealt with years of painful symptoms from lupus — from shingles and pneumonia to kidney disease and chronic fatigue. She said she is happy to see more funds being used to study how lupus affects brain function.

“The brain is like the engine of a car,” said Chisholm, a beauty corporate trainer for Walgreens who lives in Hollis, Queens. “Without that, you can’t operate anything else.”

Because their symptoms are not always apparent, some lupus patients said they feel like they have an “invisible illness” that is too often dismissed by people who don’t understand the disease.

“We definitely suffer in silence,” Addison said. “I think a lot of times when you’re dealing with someone who has an invisible illness, people just assume you’re OK. Sometimes you just need someone to say, 'How’s it going. Do you need anything?’ "

Diamond said people who interact with lupus patients should understand that forgetfulness and confusion is part of the disease.

“People are not ignoring them or not paying attention,” she said. “These sort of cognitive and mood disorders are still a biomedical frontier, and we often don’t treat them like we do diseases of the liver or the kidney or the heart. There is a real organic biologic basis to this that is still being discovered for which there are, as of yet, no therapies.”

By Lisa L. Colangelo

lisa.colangelo@newsday.com@lisalcolangelo

Lisa joined Newsday as a staff writer in 2019. She previously worked at amNewYork, the New York Daily News and the Asbury Park Press covering politics, government and general assignment.