By Hilary Metcalfe
In the realm of chronic illnesses, autoimmune diseases stand out as particularly insidious and misunderstood. Affecting millions worldwide, these conditions often leave patients grappling with debilitating symptoms and an overwhelming sense of uncertainty. Yet, a striking and often overlooked fact about autoimmune diseases is their disproportionate impact on women.
Nearly 80% of individuals diagnosed with autoimmune diseases are women, a statistic that underscores the urgent need for greater awareness, research, and targeted healthcare strategies.
Autoimmune diseases are characterised by the immune system mistakenly attacking the body's own tissues, leading to chronic inflammation and a host of complex symptoms. For women, the journey from the onset of symptoms to a definitive diagnosis can be particularly arduous. The symptoms are often vague and overlapping with other conditions, leading to misdiagnosis and prolonged suffering.
On average, it takes a staggering five years and often up to 10 years, for many women to receive an accurate diagnosis, during which time their quality of life can deteriorate significantly.
The gender disparity in autoimmune diseases is not merely a statistical anomaly; it is a reflection of deeper biological, genetic, and environmental factors.
Understanding why women are more susceptible to these conditions is crucial for developing effective treatments and support systems. This blog aims to shed light on the unique challenges women face in dealing with autoimmune diseases, the most common types affecting them, the typical symptoms, and the often long and winding road to diagnosis. By increasing awareness and knowledge, we hope to pave the way for better outcomes and improved quality of life for women battling autoimmune diseases.
Understanding the Gender Disparity in Autoimmune Diseases
Genetic Factors and Sex Chromosomes
Women have two X chromosomes, while men have one X and one Y chromosome. The X chromosome carries a higher density of genes related to the immune system, meaning women have a higher probability of encountering genetic variations.
Hormonal Influences
- Oestrogen: This primary female hormone has a significant impact on immune system function. Oestrogen, which fluctuates during puberty, pregnancy and menopause, can enhance the activity of immune cells, potentially leading to an overactive immune response.
- Progesterone and Other Hormones: High progesterone levels have anti-inflammatory effects and favour immune response. When progesterone levels drop, such as after childbirth or during menstruation, symptoms such as fatigue and joint pain may appear or worsen due to increased inflammation.
Environmental Triggers
- Exposure to Endocrine Disruptors: On average, women consume many more personal care products than men and assume more domestic duties like cleaning and laundry. Therefore, women are often more exposed to endocrine-disrupting chemicals (EDCs) found in personal care products, cosmetics, and household items. If not made aware of the important distinction to opt for all natural skincare, personal and home care products with natural or no fragrances, women are at higher risk for the exposure of EDCs that can mimic or interfere with hormone balance, potentially disrupting immune system balance and increasing the risk of autoimmune diseases.
- Infections: Certain infections, such as Epstein-Barr virus (EBV), human papillomavirus (HPV) and hepatitis can act as triggers for autoimmune diseases. Women’s immune systems might react differently to infections due to their hormonal environment, leading to a higher likelihood of developing autoimmune responses, as these infections might initiate an overactive immune response.
- Lifestyle Factors: Women’s different lifestyle and occupational exposures, such as higher levels of chronic stress, dietary patterns low in nutrients, and increased exposure to environmental pollutants from personal care products, may contribute to the higher incidence of autoimmune diseases. These factors, alongside biological and hormonal differences, can lead to immune system dysregulation, increasing the likelihood of developing conditions like lupus, rheumatoid arthritis, and other autoimmune disorders.
Epigenetic Changes
Environmental factors can lead to epigenetic changes, which are modifications in gene expression without altering the DNA sequence. These changes can affect how genes related to the immune system are expressed, potentially leading to autoimmune diseases. Women may be more susceptible to certain epigenetic changes due to their unique hormonal and genetic makeup. Equally, EDC exposure, especially consistently, over long periods of time, plays a role in switching on epigenetic gene expression, which can result in autoimmune dysfunction, hormone imbalance and if unchecked, heightened risk of various types of cancer or birth defects as EDCs can cross the placenta (such as phthalates, the type of EDC found in synthetic fragrances).
Microbiome Differences
The gut microbiome, which plays a crucial role in immune system regulation, differs between men and women. These differences can influence immune responses and susceptibility to autoimmune diseases. Hormonal changes throughout a woman’s life can also affect the composition of the gut microbiome, further impacting immune function.
Pregnancy and Childbirth
Pregnancy induces significant changes in a woman’s immune system to accommodate the developing foetus. These changes can sometimes trigger or worsen autoimmune diseases. Postpartum hormonal fluctuations can also contribute to the onset or exacerbation of autoimmune conditions. During pregnancy, cells and DNA from the fetus can enter the mother’s bloodstream and persist for years. This microchimerism can influence the mother’s immune system and potentially lead to autoimmune reactions. Conversely, it can also strengthen the mother’s immune system, it goes both ways.
Psychosocial Factors
- Stress: Chronic stress has been shown to negatively impact the immune system. Women often experience higher levels of chronic stress due to societal, familial, and occupational pressures, which can contribute to the development and exacerbation of autoimmune diseases.
- Healthcare Access and Advocacy: Women may face challenges in accessing healthcare and advocating for themselves. Gender biases in the medical community can lead to underdiagnosis or misdiagnosis of autoimmune diseases in women, prolonging the time to receive appropriate care.
Common Autoimmune Diseases in Women and Their Typical Symptoms
Autoimmune diseases encompass a wide range of conditions, each with its own set of symptoms and challenges. While these diseases can affect anyone, they are particularly prevalent among women. Understanding the most common autoimmune diseases and their typical symptoms can help in recognising and managing these conditions more effectively.
Systemic Lupus Erythematosus (SLE)
Systemic Lupus Erythematosus, commonly known as lupus, is a chronic inflammatory disease that can affect various parts of the body, including the skin, joints, kidneys, brain, and other organs. This disease is nine times more common in women than in men.
Typical symptoms of lupus include persistent and often debilitating fatigue, joint pain and swelling, especially in the hands, wrists, and knees, and a distinctive butterfly-shaped rash across the cheeks and nose, known as a malar rash. Additionally, individuals with lupus may experience increased sensitivity to sunlight, which can trigger or worsen rashes, unexplained low-grade fevers, and inflammation in organs such as the kidneys (nephritis), heart (pericarditis), and lungs (pleuritis). Neurological symptoms like headaches, confusion, and seizures are also common.
Rheumatoid Arthritis (RA)
Rheumatoid Arthritis is an autoimmune disorder that primarily affects the joints, leading to inflammation, pain, and potential joint damage. Women are two to three times more likely to develop RA than men.
The disease often presents with joint pain and swelling, particularly in the hands, wrists, and feet. Morning stiffness lasting at least 30 minutes is a hallmark of RA. The condition typically affects joints on both sides of the body equally, contributing to symmetrical symptoms. Other common manifestations include a general feeling of tiredness and malaise, the presence of firm lumps under the skin near joints called nodules, and, in advanced stages, joint deformity.
Multiple Sclerosis (MS)
Multiple Sclerosis is a neurological disease that affects the central nervous system, leading to a wide range of symptoms. Women are two to three times more likely to develop MS than men.
Common symptoms include muscle weakness or numbness in one or more limbs, coordination problems affecting balance, and vision issues such as blurred or double vision, partial or complete loss of vision. Individuals with MS often experience sensations of electric shocks with certain neck movements, severe fatigue that impacts daily activities, and cognitive changes like memory problems, trouble concentrating, and mood swings.
Hashimoto's Thyroiditis
Hashimoto's Thyroiditis is an autoimmune disorder that affects the thyroid gland, leading to hypothyroidism (underactive thyroid). This condition is significantly more common in women, especially during middle age.
Typical symptoms include constant tiredness and lack of energy, unexplained weight gain despite no change in diet or exercise, sensitivity to cold temperatures, and persistent constipation. Women with Hashimoto's may also experience dry and coarse skin and hair, hair loss, muscle weakness and cramps, feelings of sadness and depression, and difficulty concentrating and memory lapses.
Psoriasis and Psoriatic Arthritis
Psoriasis is an autoimmune skin disease that causes red, scaly patches on the skin, while psoriatic arthritis is a related condition that affects the joints. Typical symptoms of psoriasis include red patches of skin covered with thick, silvery scales, dry and cracked skin that may bleed, and itching and burning sensations on the affected areas. Nail changes such as thickened, pitted, or ridged nails are also common. In psoriatic arthritis, individuals often experience joint pain and stiffness, particularly in the fingers, toes, and spine, along with sausage-like swelling of the fingers and toes and reduced range of motion in the affected joints.
The Long Road to Diagnosis and How to Improve It
The journey to an accurate diagnosis of autoimmune diseases can be exceptionally long and fraught with challenges, often leaving patients feeling frustrated and hopeless. On average, it takes around five years for patients to receive a correct diagnosis, during which their quality of life can deteriorate significantly. Several factors contribute to this delay, including the non-specific nature of symptoms, lack of awareness among both patients and healthcare providers, and the complexity of diagnostic tests.
Challenges in Diagnosing Autoimmune Diseases
One of the primary reasons for the lengthy diagnostic process is the non-specific nature of symptoms associated with autoimmune diseases. Symptoms such as fatigue, joint pain, and skin rashes are common to many conditions, leading to misdiagnosis or being dismissed as stress-related or minor issues. For example, lupus and rheumatoid arthritis both present with joint pain and fatigue, but require different treatments and management strategies.
Additionally, there is a general lack of awareness and understanding of autoimmune diseases among both patients and healthcare providers. Many people, including medical professionals, may not immediately recognise the signs of autoimmune diseases. Women, in particular, may face biases in the healthcare system, where their symptoms are sometimes underestimated or attributed to psychological causes, further delaying diagnosis.
The complexity of diagnostic tests also contributes to the delay. Diagnosing autoimmune diseases often requires a series of specialised tests, which may not be readily available or utilised early in the diagnostic process.
A Call to Action: Empowering Women Against Autoimmune Diseases
The journey of women suffering from autoimmune diseases is fraught with pain, uncertainty, and often, neglect. These invisible battles, waged daily against relentless and misunderstood conditions, demand our immediate attention and action. We must unite to break the silence surrounding autoimmune diseases, to lift the veil of ignorance, and to provide the care and support that millions of women desperately need and deserve.
To the women enduring this silent struggle: Your pain is real, your battle is significant, and your voice matters. Advocate for yourself, seek second opinions, and connect with support groups that understand your journey. Your resilience is inspiring, and your determination will pave the way for better days.
To healthcare providers: Listen, learn, and lead with empathy. Recognize the signs, consider the nuances, and commit to continual learning about autoimmune diseases. Your dedication can make a difference, offering hope where there has been despair.
To researchers and policymakers: Invest in the future of autoimmune disease research. Fund innovative diagnostic tools, support comprehensive studies, and prioritize healthcare policies that address these critical issues. Your efforts are the catalyst for change, transforming the lives of countless women.
Together, we can transform the narrative around autoimmune diseases. We can ensure that no woman has to endure the prolonged pain of misdiagnosis or the isolation of misunderstood symptoms. Let us stand together, informed and united, to bring about a future where autoimmune diseases are swiftly recognized, effectively treated, and ultimately, eradicated.
ABOUT HILARY
Hilary is the Co-Founder of the SABI, a Holistic Nutritionist, natural, whole foods Chef, product developer and advocate for women getting to know their bodies, cycles and selves better. Born in Los Angeles, California and raised in Baja California, Mexico, she now lives in Amsterdam, The Netherlands with her partner Kees, a curly-tailed rescue dog from Curacao, Flint and her rainbow baby, Paloma.
-
