Autoimmune Disease & Women
The Research Behind the Stories
The numbers tell us something important. The women behind those numbers tell us why it matters.
Autoimmune Disease and WomenAutoimmune diseases disproportionately affect women. The National Institutes of Health (NIH) cites estimates that nearly 80% of people living with autoimmune diseases are women. These conditions occur when the immune system mistakenly attacks the body's own healthy cells, tissues or organs. Autoimmune diseases can affect nearly every system in the body, and many are chronic, complex and life-altering. Despite their prevalence, researchers are still working to understand why women are so much more likely to develop these conditions.
Source: NIH Office of Research on Women's Health
One Immune System. More Than 140 Diseases.More than 140 autoimmune diseases have been identified. They include conditions such as lupus, rheumatoid arthritis, multiple sclerosis, Sjögren's disease, Hashimoto's thyroiditis, type 1 diabetes and autoimmune neuropathies. These diseases can affect the nervous system, joints, skin, thyroid, digestive system, kidneys and other organs. Although they share an underlying feature of immune system dysfunction, their symptoms, progression and treatment can differ dramatically.
Source: NIH and autoimmune disease research organizations.
The Biological Puzzle: Why Women?Why are women disproportionately affected by autoimmune diseases? Researchers believe the answer involves a complex interaction of genetics, hormones, immune system regulation and environmental factors. Women typically have two X chromosomes, which carry numerous genes involved in immune function. Hormones such as estrogen can also influence immune responses. Scientists continue to investigate how these biological differences may contribute to women's increased susceptibility to autoimmune conditions.
Source: NIH research on sex differences in autoimmune disease.
When Symptoms Don't Have an Immediate ExplanationAutoimmune diseases can be difficult to diagnose. Symptoms may overlap with other conditions, fluctuate over time and affect multiple organ systems. Fatigue, pain, weakness, inflammation and neurological symptoms can have many possible causes. For some patients, reaching a diagnosis involves years of appointments, testing and referrals. The diagnostic journey can be physically and emotionally exhausting, particularly when symptoms are not immediately recognized or understood.
Source: NIH and clinical research on autoimmune disease diagnosis.
When Women Aren't BelievedFor generations, women's physical symptoms have sometimes been attributed to stress, anxiety or psychological causes without adequate investigation. Research on gender bias in healthcare has documented differences in how women's pain and symptoms are evaluated and treated. While not every delayed diagnosis is the result of bias, the dismissal of symptoms can have serious consequences. Listening to patients, taking symptoms seriously and pursuing appropriate investigation are essential parts of equitable healthcare.
Source: Research on gender bias, pain assessment and healthcare disparities.
Autoimmune Disease is Often InvisibleNot every illness is visible. A woman living with an autoimmune disease may appear healthy while experiencing debilitating fatigue, nerve pain, weakness, cognitive difficulties, inflammation or other symptoms. The absence of visible signs does not mean the absence of illness. Invisible conditions can profoundly affect a person's ability to work, exercise, care for family and participate in everyday life.
Statistics help explain the scale of autoimmune disease, but they cannot fully communicate the human experience. Behind every diagnosis is a person navigating uncertainty, pain, treatment, loss, resilience and change. The Pink Gene Project seeks to make those individual experiences visible through portraiture and storytelling.
The Pink Gene Project brings together art, science and lived experience to explore the intersection of autoimmune disease, chronic illness and medical dismissal.