by Women's Health Updated 10/2021
Autoimmune (AI) diseases may not be at the top of your list of women’s health concerns. Awareness of these chronic disorders, it seems, is frequently overshadowed by such headliners as breast cancer and reproductive concerns. AI disease, however, may be more prevalent than you realize; there are, after all, more than 23.5 million Americans living with these disorders, according to the National Institutes of Health. And with approximately 75 percent of them being women, it’s time for these conditions to get their share of the women’s health spotlight.
How common are AI diseases? It’s likely that you know someone who is affected, even if you’re not aware that many common health conditions are linked to autoimmunity. Do you know, for example, someone who’s been diagnosed with rheumatoid arthritis (RA), an autoimmune condition that affects the joints as well as other organs and tissues? The Arthritis Foundation reports that 1.3 million Americans are living with RA. There are, in fact, more than 80 recognized AI diseases; for example, you may have heard of multiple sclerosis (MS, which affects the central nervous system) and lupus (which affects the skin, joints, kidneys, brain, and other organs).
When Autoimmune Disease Hits Home
Nancy English, a patient at the Cleveland Clinic who lives in University Heights, Ohio, was 43 years old when she was told that she had lupus. “I had several signs and symptoms that led me to the doctor and ultimately the diagnosis,” Nancy says. She explains that the pigmentation of her skin changed, as areas around her eyebrows, the bridge of her nose, and across her cheeks became lighter. The joints in her hands, feet, and knees were also stiff and very painful with excessive swelling; her muscles were sore, and her hair was falling out. After her doctor performed several tests to rule out other conditions, such as kidney and liver problems, followed by an antinuclear antibody test, Nancy was diagnosed with lupus.
Extreme fatigue, says Nancy, has proven to be a central challenge of living with lupus. “Before I was diagnosed, I was very active,” she explains of her busy life balancing full-time work in public service with raising her three daughters. However, “as the symptoms progressed,” Nancy says, “I could barely keep my work schedule.” Furthermore, it became increasingly difficult to keep up with responsibilities. “Accomplishing daily activities became a challenge, and I had to lean on family members for assistance.”
Nancy has also experienced another common challenge of living with an AI disease: because symptoms are often invisible, others often don’t fully grasp the extent of a person’s limitations. “Since lupus is essentially an invisible disease, one of the biggest challenges of living with it is the fact that I may look perfectly healthy while being in pain or not feeling well,” she explains. “Most people do not understand that just because I look healthy does not mean I feel well.” She says that she’s often frustrated when people around her don’t recognize just how unwell she feels and even expect her to do things she can’t physically handle.
Autoimmune Disease Explained
DeLisa Fairweather, PhD, an assistant professor in the Department of Environmental Health Sciences at Johns Hopkins Bloomberg School of Public Health, explains that AI diseases are disorders of the immune system. “Normally, you have an immune response that protects you against infections or physical damage,” she says of a properly functioning immune system. In the case of AI disease, however, the immune system can actually turn this protective response against the body that it’s intended to defend, causing damage to tissues or organs.
In other words, says Sabra Klein, PhD, assistant professor of molecular microbiology and immunology at Johns Hopkins Bloomberg School of Public Health, AI diseases develop when our immune system mistakenly identifies our own tissues as foreign and reacts against them: “Our immune system is really there to defend us against [harmful] things in our environment—such as viruses and bacteria—but sometimes it can incorrectly recognize our own cells and mount responses to our own bodies.”
According to the American Autoimmune Related Diseases Association, there are more than 80 recognized AI diseases and at least 40 other conditions that are thought to result from autoimmune processes. Most AI diseases are chronic (long-term) conditions without cures; so, once diagnosed, patients must manage their symptoms for life.
Causes: Environmental or Genetic?
As far as our current understanding of AI diseases goes, their origin is likely a combination of environmental (or external) and genetic factors, though it’s still not known to what degree each is responsible. Dr. Fairweather, who specializes in environmental health, says that she suspects that environmental factors play a significant role. “I think that there’s increasing evidence that AI disease can be caused by infections, chemicals, or anything that can result in physical damage to tissues,” she says of potential triggers.
As to the exact causes of AI diseases, Dr. Klein says that research has yet to draw definitive conclusions. “What precisely in our environment is contributing to increased susceptibility, we’re not quite certain,” she says, explaining that experts don’t fully understand all of the possible contributing factors.
The genetic component in the development of AI diseases, says Dr. Fairweather, is likely determined by two main areas: gender (with higher prevalence in women) and the makeup of your particular immune system (the types of immune cells you have are determined genetically). “You combine sex and a certain type of immune response and then an environmental trigger, and that determines whether you’re going to be susceptible to develop autoimmune disease,” she explains.
Prevalence in Women
Why is there a gender disparity in AI disease, and why are women affected more often than men? “Hormones are a very important part of it,” Dr. Klein explains, as sex hormones appear to play a role in immune response and, thus, symptoms of AI disease. Specifically, higher levels of estrogen in women drive certain immune responses. One way that she says this is demonstrated is in the tendency for symptoms to change in women during pregnancy, as hormone levels change.
The Challenge of Diagnosis
Diagnosing an AI disease is often a challenge in both men and women. “Many symptoms are nonspecific,” says Dr. Fairweather, explaining that often patients eventually diagnosed with an AI disease may first report issues like headache or joint pain, which could have a variety of causes. And, she adds, AI disease is often not considered initially and can involve a long testing process before a diagnosis is made.
Furthermore, due to sex hormones, a woman’s body will respond to disease triggers and disease itself differently from a man’s. And women experience shifts in hormones during menstrual cycles, which, Dr. Fairweather says, can then cause changes in symptoms and make diagnosis of conditions such as AI disease even more complicated: “You have these multiple factors that all contribute to its being difficult to diagnose autoimmune disease.”
Nancy says that by taking an active role in her own treatment, she’s been able to help her medical team manage her care. “I take an active part in my medical treatment by talking to my doctor about everything I am experiencing,” she says, explaining that together they discuss her symptoms and decide on a course of treatment. “Then I follow his instructions to the letter,” she says of the other part of her role in her care: staying on treatment.
In addition to working closely with your medical team, assembling the right team is essential. Choosing a specialist with experience in the type of AI disease or diseases with which you’ve been diagnosed is a requisite part of good care. For example, patients with rheumatic diseases (such as RA and lupus) may see a rheumatologist, and those with MS may see a neurologist. You may also see additional specialists, such as occupational, physical, and speech therapists, depending on your symptoms. Due to the many aspects of your health and well-being that may be affected by AI disease, a team approach—where providers work together to manage your care—is often fundamental to good care.
Abby Abelson, MD, FACR, chair of the Department of Rheumatic and Immunologic Diseases at Cleveland Clinic, says that to effectively treat women with AI diseases, specialists need to address women-specific issues, such as family planning, contraception, and menopause. Dr. Abelson recommends that to manage your health most effectively throughout these events and transitions, you keep an open dialogue with all of your providers—such as your gynecologist, specialists for AI disease, and your family practitioner. “Each aspect of your health and healthcare may affect another, so it’s important that everyone on your team is aware of all treatments and interventions and how you react to them,” she says.
For women who are or are considering becoming pregnant, Dr. Abelson says that medications for AI conditions need to be evaluated for whether or how they might affect the baby. Women who are breastfeeding need to ensure that drugs for AI disease will not make their breast milk unsafe for their babies (see sidebar “Autoimmune Disease and Pregnancy”).
Dr. Abelson says that oral birth control is a consideration with some AI conditions, as the hormones used for contraception may affect symptoms. For example, “There’s a risk that patients with lupus will experience a flare as a result of birth control pills and may be at higher risk of blood clots,” she explains.
Women entering menopause, says Dr. Abelson, may experience changes in symptoms related to an AI diagnosis as their hormone levels fluctuate. “Some women may have a decrease in symptoms, and some may have an increase,” she explains, adding that this is an especially important time for women to communicate openly with their healthcare team so that changing symptoms continue to be effectively managed.
For her final word on treatment, Dr. Abelson recommends that though identifying AI conditions can be a challenge, early diagnosis and treatment are key. To that end she encourages anyone experiencing unusual, persistent symptoms such as rash, joint pain, and stiffness to see a doctor immediately.
Medical treatment isn’t the only way that women with AI diseases can control symptoms and manage their health. Dr. Abelson says that a healthy lifestyle that includes a balanced diet and exercise, when possible, is important for AI patients. “Maintaining activity,” she explains, “is especially important for women due to our higher risk of osteoporosis [thinning of bone tissue] and osteopenia [loss of bone density] as we age.” Some patients, she explains, include in their treatment team a physical or occupational therapist if symptoms or disability related to AI disease makes movement difficult. The aim is to avoid becoming sedentary, as this can lead to further health complications.
“To help alleviate the fatigue, I have made some lifestyle changes, which keep my low energy level and other symptoms under control,” Nancy says. “I try to eat better (more fruits, vegetables, and whole grains), get proper rest, and generally reduce the stress”; she explains that she’s found that lupus flares occur during stressful times. To keep stress in check, Nancy has adopted an attitude of “not sweating the small stuff” and has been able to increase her energy through mild exercise with tai chi.
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Along with healthy lifestyle measures, some patients consider adding complementary and alternative medicine to their treatment plan. Dr. Abelson strongly recommends that patients discuss any such therapies or supplements with their doctor before trying them. Some may be helpful, she says, but others may be harmful.
Additionally, Dr. Abelson encourages women living with AI disease to address emotional health and says that appropriate mental health professionals, such as psychologists and social workers, can be valuable members of the treatment team. “Tending to emotional health can be a critical component of coping with autoimmune disease,” she explains. Because AI affects you in some way every day (whether you’re experiencing a flare or just managing your medications), there’s a potential impact on your emotional well-being, work life, and relationships; expert help can help you cope with these challenges.
A particular challenge in treating patients with AI disease is that it’s not uncommon to develop more than one AI condition, due to the body’s tendency to develop more antibodies over time. “As you develop more antibodies, the chances that they’re going to deposit in different tissues and organs in your body increases,” says Dr. Fairweather. This process increases your chances of developing more AI diseases. If you’re managing more than one disorder, you’ll want to be sure that you are being treated by qualified specialists in each area.
The outlook for treatment of patients with AI disease, our experts agree, is generally positive, and women in particular may stand to benefit from progress in research.
According to Dr. Abelson, as awareness increases among physicians that AI conditions need to be managed specifically with women’s needs in mind, women may benefit from more-individualized treatment. This approach, she explains, “will take into account gender differences along with the changes a woman experiences through various phases of life—such as during her childbearing years, pregnancy, and menopause.” Dr. Abelson adds that research is contributing to improved drugs; for example, medications that specifically target inflammatory processes in rheumatic conditions can provide significant symptom relief for patients.
Dr. Fairweather says that progress in understanding and managing AI diseases will come with increased study of how these conditions affect men and women differently. “We need to increase awareness of studying sex differences—I see promising changes with that,” she says. This area of research will not only improve understanding of disease processes but also help scientists develop therapies that are designed specifically for each gender.
According to Dr. Klein, a specific area of promise is in estrogen therapy for women with severe MS, which is “showing some really promising results.” She further explains: “You can’t reverse the damage that’s already been done, but you can slow the damage and you can stop the progression of new damage in these women”—a breakthrough that could significantly improve the well-being of women with MS. It’s hoped that research along these same lines can have a positive impact on other diseases.
It’s All About Awareness
Awareness, it appears, is the key to understanding and managing AI disease in women. From diagnosis to research to long-term management, increased attentiveness to these conditions, their symptoms, and their impact on women in particular will help in accurate diagnosis and care that’s personalized for women’s needs.
Patients like Nancy are also doing their part to raise awareness. “I have become an advocate to raise awareness about the disease [lupus] through education,” she says of her own efforts. “I now take every opportunity to communicate with my friends and family and provide them with information about the various aspects of lupus so that they understand what I am going through.” She also reaches out to a larger audience using social media.
Becoming “your own best advocate” with such efforts, Nancy says, is the best advice she can give to others affected by AI disease: “Learn as much as you can about your disease and take an active role in your medical care.” She also encourages others to create a support system, particularly by finding “someone you trust to help you through the hard times.”
- Autoimmune Disease in Women. American Autoimmune Related Diseases Association website. Available at: .
Autoimmune Disease and Pregnancy
The way in which an AI disease might affect pregnancy and vice versa differs according to disease types and, of course, the individual. Some women may find that their symptoms are reduced during pregnancy, as can happen with RA and MS. Other women may have risks surrounding pregnancy due to an AI disease, as is the case with lupus.
Dr. Abelson explains that women with lupus who become pregnant may have a higher risk of complications. “Lupus can affect pregnancy,” she says, “with risks such as preterm delivery and loss of pregnancy.” She recommends that lupus patients who want to plan a family make sure that their obstetrician/gynecologist (OB/GYN) and rheumatologist work together to manage medications and monitor symptoms so that potential complications are avoided or caught early. She says that some women with lupus may choose to see an OB/GYN who specializes in high-risk pregnancies.
For the fortunate women whose symptoms are lessened during pregnancy, Dr. Klein says that their relief is likely the result of hormone changes that occur with pregnancy, which affect immune response. “One of the things that happens in women over the course of pregnancy,” she explains, “is we start to experience very significant increases in hormones like estrogen and progesterone, and these hormones reduce our inflammatory immune responses.” The result, she says, is less inflammation during pregnancy and therefore reduced symptoms.
As well as being a great relief for pregnant women, this reduction in symptoms may also give researchers a lead on ways to better control AI symptoms. “From a research perspective,” says Dr. Klein, “it’s interesting to think about the events that are going on during pregnancy—are there ways that you could re-create that in a nonpregnant woman?” Studies to better understand the effects of pregnancy on AI symptoms are under way, she adds.
For information about AI diseases
• The American Autoimmune Related Diseases Association, aarda.org
• US National Library of Medicine/National Institutes of Health, nlm.nih.gov/medlineplus/autoimmunediseases.html
For information about women’s health issues:
• National Institutes of Health Office of Research on Women’s Health, orwh.od.nih.gov
• US Health and Human Services Office on Women’s Health, womenshealth.gov
For information about specific AI conditions:
• Visit the websites of organizations dedicated to the disease in question. The links on the American Autoimmune Related Diseases Association AI disease resource page can help you get started: aarda.org/links.php.