By Jessica Migala via AARP
Illustrations by Matt Chinworth
Our risk of these common disorders may be much higher than that of our parents, researchers say. What’s going on?
FOR DEBBY VIVARI, 68, it manifested as insomnia, a tightness in her face, and eyes so dry that no amount of artificial tears could stop the burn. The now-retired IT pro from Rockville, Maryland, was told she had Sjögren’s syndrome, which attacks the body’s moisture-producing glands.
For Hedy Govenar, it started in 2007 when she noticed her golf game was suffering. Her arms felt unusually heavy; soon the 77-year-old from Sacramento, California, was struggling to brush her teeth. The diagnosis: giant cell arteritis, a disease affecting blood vessels that feed the head, neck and arms.
What 70-year-old Gene Davis thought was a stomach bug only got worse, until the retired financial manager from Allentown, Pennsylvania, found he had to stay within sprinting distance of a bathroom at all times. His doctors informed him he had ulcerative colitis, an inflammatory bowel disease.
Paula Cross, 59, was driving near her home in Niles, Ohio, when her vision in one eye went completely black for three seconds. Cross saw an ophthalmologist, who, when she noticed that Cross’ eyes were visibly bulging, diagnosed her with thyroid eye disease, in which antibodies attack both the thyroid and certain cells surrounding the eyes.
These four people experienced wildly different symptoms, and each individual had a different diagnosis. The root cause of the various maladies, however, was the same.
All four patients’ immune systems had staged an inexplicable attack on a part of their body.
A MEDICAL PUZZLE
AUTOIMMUNE DISEASES—a diverse class of afflictions caused by an errant immune system—are scary, often debilitating and sometimes deadly. And, for reasons that researchers don’t fully understand, cases seem to be rising precipitously, especially among people age 50-plus.
“I’ve been trying to unravel the mysteries of autoimmunity for four decades,” says Frederick Miller, M.D., scientist emeritus with the Environmental Autoimmunity Group at the National Institutes of Health. “Autoimmune conditions, like most diseases, are diseases of age.” If they’re increasing, as his research suggests, over the next 50 years autoimmune diseases as a group will be some of the most common and costly diseases in society, he notes.
How autoimmune disease manifests itself varies so much that more than 100 conditions fall into this category—some are mild and manageable; others, life altering. Among the most common autoimmune disorders in the U.S. are Crohn’s disease, type 1 diabetes, multiple sclerosis (MS), rheumatoid arthritis, Hashimoto’s thyroiditis, celiac disease (an immune reaction to gluten, the protein in wheat, barley and rye) and psoriasis. What brings them together is their root cause: Your immune system is battling some part of you—an organ, your nerves, your joints, your skin, your blood vessels.
“With an autoimmune disease, your immune system attacks healthy tissues and structures in your body,” says Timothy Niewold, M.D., director of the NYU Langone Judith and Stewart Colton Center for Autoimmunity. “These normal defenses, which work to keep viruses and bacteria at bay to prevent illness, have essentially gotten confused and set off friendly fire against your own body.”
If it seems like you’ve been hearing more about these diseases over the past few years, you’re not wrong. Ghostbusters star Harold Ramis died at age 69 in 2014 of complications from vasculitis, an autoimmune inflammation of the blood vessels. In 2016, Eagles cofounder Glenn Frey succumbed at 67 to complications caused by two autoimmune diseases—rheumatoid arthritis and ulcerative colitis—and pneumonia. And younger celebrities, including Venus Williams, Selena Gomez and Kim Kardashian West, have opened up about their issues with similar diseases. Overall, as many as 23.5 million people in the United States have an autoimmune disorder, according to the National Institute of Environmental Health Sciences.
But it wasn’t until Miller’s groundbreaking study, published in 2020 in the journal Arthritis & Rheumatology, that strong evidence emerged that these conditions may indeed be on the rise. His team analyzed the blood samples of 14,211 people ages 12 to 90 taken over the span of more than two decades, looking for the prevalence of antinuclear antibodies (ANA), the most common biomarker of autoimmune disease. “ANA do not tell you if you have an autoimmune disease, though in many cases they can be the first sign of some immune irregularity that could later lead to one,” Miller explains. ANA can be present for many years before any symptoms start, and some people with ANA may never develop an autoimmune disease.
Still, the results of Miller’s research were startling. About 11 percent of all people tested between 1988 and 1991 had ANA in their blood, indicating that about 22 million people were affected. That percentage steadily increased through the decades, until 2011 to 2012, when it reached nearly 16 percent. This corresponded to about 41 million people, which is a near doubling of possibly affected individuals.
The two groups that saw the biggest rise? Adolescents and older adults. In fact, after adjusting for differences in sex, race, smoking, alcohol use and body mass index—all factors that have independently been shown to be associated with autoimmune disease—Miller’s research team found that, compared with 25 years ago, older adults today have a 50 percent higher risk of having ANA in their blood.
A CORNUCOPIA OF CAUSES
WHAT COULD BE going on? That’s the billion-dollar question. One factor in the rise of autoimmune disease may be our changing environment and lifestyles, Miller believes. “In the past 30 years we have had more than 80,000 chemicals approved for use in this country,” he observes. “We have a totally different diet, with processed foods, additives and fast foods. We’re more sedentary. There’s an obesity epidemic. We have a different pattern of infectious agents, even pre-COVID-19, with more emerging yearly. The environment is noisier, and there are more stressors.”
How the immune system interacts with all these evolving environmental agents is still poorly understood. But the bottom line is that there are potentially hundreds of irritants that could be causing our immune systems to become confused. And the longer we live, the more exposure we have to these irritants. What’s more, everyone has a different genetic background, which makes the emergence and severity of these diseases unique to each individual—and even more puzzling to researchers.
“We’re living in a complex world,” Miller says.
A LIFE-CHANGING DIAGNOSIS
“COMPLEX” CAN ALSO describe an individual’s relationship with the disease itself. For some people, autoimmune disease manifests in symptoms that are mere annoyances or manageable with modest medical intervention, as with mild psoriasis. For others, the condition can be life altering.
Twenty years ago, Annie Brewster, M.D., then a medical intern, was going through a divorce and had a 2-year-old in tow. Her feet started tingling. It’s probably nothing, she thought. After all, Brewster spent her days running around, wasn’t sleeping, and labored under ever-growing stress.
As the prickling started creeping up her legs, reaching her mid-belly, she could no longer ignore it. A neurologist diagnosed her with MS, an autoimmune disease of the nervous system. Damage to the myelin sheath, which protects nerve cells, leads to muscle weakness, balance issues, numbness and prickling, and thinking problems. There is no cure for this progressive disease, which, in some people, causes long-term disability.
“When I was struggling to accept my diagnosis, I’d take care of patients with really debilitating MS,” Brewster notes. “They would be paralyzed, in bed and with bedsores, and it was difficult to think, That might be me one day.”
Now 53, Brewster is an internal medicine physician at Massachusetts General Hospital in Boston and an assistant professor at Harvard Medical School, and while she has carried on with life for two decades with MS, her symptoms reappear periodically. When her legs feel weak, she can still get around to treat patients, but it makes her wonder, Where is this going to go? “What I fear most is losing my cognitive function,” she says. “As we get older, we all start to forget more things. But when I walk into a room and forget what I came in for, my brain automatically shifts to, Is this normal aging or is this the MS?”
When you’re told you have a lifelong and potentially progressive illness, your headspace gets flooded with what this means for your future. For Gene Davis, after he was diagnosed with ulcerative colitis, a gastrointestinal condition in which small sores develop in the lining of the colon, what struck him was the permanency of his illness. “When I found out there was no cure for ulcerative colitis, it took a big mental toll on me,” he admits. For years, he and his wife had fantasized about spending their retirement traveling. His illness has forced them to change their retirement plans, something that’s been difficult to accept.
THE RACE FOR A CURE
SOME AUTOIMMUNE diseases progress slowly; others advance more rapidly. The longer you wait to address the symptoms, the more underlying havoc they may cause. Research shows that people with inflammatory bowel disease are up to five times more likely than those without it to develop colon cancer. Likewise, among those with rheumatoid arthritis, the odds of heart disease are almost doubled.
Yet finding a treatment that works, or doesn’t harm you outright, can be a winding road. “It’s common that the first or second medication isn’t really effective,” says Reem Jan, an assistant professor of medicine and a rheumatologist at University of Chicago Medicine.
Medicines often include nonsteroidal anti-inflammatory drugs (NSAIDs, such as ibuprofen) and immune-system suppressants (such as steroids), disease-modifying anti-rheumatic drugs (DMARDs), and biologics, a type of immunosuppressant made from natural compounds. “These take an overly aggressive immune system and suppress it back to normality,” explains Daniel Mueller, M.D., a professor of medicine at the Center for Autoimmune Disease Research at the University of Minnesota Medical School.
Despite the numerous medications available, “steroids, for better or worse, tend to be the go-to therapies for many of these diseases,” says Mary K. Crow, M.D., a professor of medicine and a senior scientist at the Hospital for Special Surgery and Weill Cornell Medical College in New York City. “Even when patients are treated with biologics, many are also on steroids, but these drugs have terrible toxicities, including an increased risk of diabetes and infection. The treatment can sometimes be worse than the disease.”
Immunosuppressants also come with their own risks; they are designed to lower the body’s defenses, and that can result in dangerous consequences. Indeed, after Glenn Frey’s death, his manager suggested that it was the battery of drugs he was taking to treat his rheumatoid arthritis that had set the stage for his death.
When Hedy Govenar was first treated for giant cell arteritis, her rheumatologist prescribed a steroid called prednisone. Unfortunately, the initial dose was far too high, creating unbearable side effects. “I was shaking all the time,” Govenar recalls. “I lost the ability to sleep. I had no control over my hands, so I could no longer write. My face was misshapen. I didn’t want anyone to see me.”
THE COMING REVOLUTION
BUT IF CASES OF autoimmune disease are proliferating, so too are novel treatments. New drugs are coming on the market at a tremendous pace. One autoimmune disease that targets the central nervous system (neuromyelitis optica spectrum disorder) had zero approved treatments in 2019, but since then, three effective approaches have been developed. “For lupus alone, a disease I specialize in, there are many drugs in clinical trials and more are getting approved,” Crow says. Bone marrow transplants for MS and scleroderma (an overgrowth of collagen in the skin and other organs) are another recent breakthrough; the treatment works by rebooting the immune system to stop the inflammation. The current therapy, however, is less effective in older patients than in younger ones.
The holy grail for doctors is developing medications that can substitute for steroids—that can cool the immune response but don’t have the same side effects, Crow adds.
When a new autoimmune treatment gets the green light, physicians are frequently able to use it to address a variety of diseases that share similar immune pathways, creating a sort of virtuous circle. For example, the list of approved biologics is constantly growing; they can now be used to treat diseases ranging from arthritis to psoriasis to inflammatory bowel disease.
Because there are so many new treatments popping up, locating the right doctor—one who is up to date on the latest research and can direct you to the most promising treatments or even to a clinical trial—is crucial. (See “The Right Help,”.)
LIKE MANY PEOPLE with an autoimmune disease, internist Annie Brewster had to make a difficult choice about her treatment. Her physicians identified a drug that helped slow the progression of her MS. After that medication was linked to a deadly brain infection, however, she stopped taking it. “I had to balance out what was worthwhile: Would I rather risk becoming disabled or dead?” she says.
Brewster founded Health Story Collaborative, a group that promotes patient storytelling as a way to heal and help others. It was born of her own struggles to accept her autoimmune disease. “Initially, I was afraid that my MS would consume all of my identity,” she reveals. “Now I find myself craving the stories of others with chronic illnesses; it has given me new strength and empathy to be a better person and a better doctor.”
Most autoimmune diseases are lifelong. Though many cases are mild and some symptoms come and go throughout life, others require nearly constant management. No matter where Brewster’s illness takes her, learning about the redemption stories of other patients with illness has given her faith that she will be OK. “They have taught me to let go of some of the fear associated with my illness. I’ve seen that no matter what, you can find a way to make a meaningful life.”
THE RIGHT HELP
How to locate the best physician for you
IF YOU BEGIN experiencing strange and seemingly unrelated symptoms, tell your doctor. Be sure to mention whether one of your relatives has any known autoimmune condition; these tend to run in families—an aunt’s lupus could provide clues to your own bout with achy joints or gastrointestinal woes. This info may lead your physician to refer you to a specialist faster, or to order tests that can look for certain inflammatory markers or autoimmune antibodies that can help with diagnosis. If you’ve received a diagnosis of an autoimmune disease, go online and search the name of the illness plus the word “association.” You’ll often discover a nonprofit that can educate you about your condition and help you find a top specialist in your area.
THE BIG CHILL
FLARE-UPS of autoimmune disease come and go throughout life, often triggered by stress, says Michelle Dossett, M.D., an integrative medicine specialist at UC Davis Health in Sacramento, California. “High or chronic stress creates wear and tear on the body that exacerbates inflammation and worsens chronic disease,” she adds. She regularly prescribes the following techniques to help prolong disease remission and improve quality of life:
Apps such as Headspace, Calm and Insight Timer teach easy-to-follow meditations of varying lengths.
YOGA OR STRETCHING
If you’re limited in your mobility because of your disease, give chair yoga a try.
One review found that this practice improved quality of life for multiple sclerosis patients.
CONTROLLED BREATHING TECHNIQUES
Try the Breathwrk or iBreathe app for breathing exercises. Simple mindfulness exercises may also help with stress management and pain control.
A study of women with lupus showed that muscle strength and cardiorespiratory fitness were both associated with improved quality of life.