Women*, and particularly women over 40, are disproportionately affected by autoimmune (AI) diseases like multiple sclerosis (MS), psoriasis, and rheumatoid arthritis. Twill Care, Twill's community-based platform, supports those in midlife and/or living with AI diseases so that they can thrive.
Twill Care’s inclusive online spaces—for Psoriasis, MS, Women & Midlife, and Pregnancy—are focused on improving patient experiences and outcomes through identifying individuals who are untreated or seeking out new prescriptions and treatments, and positively impacting Rx treatment duration and compliance.
*In this article, "women" refers to any person assigned female at birth
For women living with an autoimmune (AI) disease, getting the right support and care for their needs can be extremely difficult. For more than 20 years, scientists have known there is a sizable gender gap in AI disease prevalence—yet there is still a wealth of unmet needs in terms of adequate healthcare that effectively supports women's physical and emotional well-being.
Alongside common symptoms like fatigue and pain, depression and anxiety are also prevalent among people living with AI disease. In midlife, the severity of both the physical and psychological aspects of their condition may be exacerbated by the fluctuation of hormones during menopause.
AI diseases have wide ranging effects on both physical and mental health, and it is essential to help to remove barriers created through lack of education, communication, and fragmented health support. People living with AI diseases face a multitude of challenges, and often have many unanswered questions when it comes to their illness, such as:
- Which doctor can help me with my condition?
- What does my diagnosis mean?
- How do I manage the symptoms I’m still having?
- What are my other options if this isn’t working?
This is why Twill created Twill Care, a patient-centric community platform. Twill Care was designed to help people with specific conditions or in specific life stages manage their physical and mental health, and get access to care when they need it. Twill Care communities are supportive, safe spaces to ask questions and share experiences. People can belong to multiple communities; all are unified within one app.
Twill Care may also help improve treatment duration and adherence, through educating patients on the benefits of their medication and encouraging them to continue to take it as directed. This can be particularly important for individuals who are on lifelong medication regimens, as non-adherence can ultimately influence the effectiveness of treatments.
An Overview of Autoimmune Disease & Gender Disparity
In the U.S., AI diseases constitute the third most common category of disease after cancer and cardiovascular disease (ref), and currently over 80 types of AI diseases have been identified. Put simply, AI diseases occur when the body’s natural defense system attacks itself because it cannot tell the difference between its own cells and foreign cells.
Although they constitute one of the most common disease categories, the difference in gender prevalence is stark: approximately 80% of people affected by AI diseases are women (ref1, ref2). Not only this, AI diseases are now known to constitute a leading cause of death among young and middle-aged women (link).
For any AI disease, the average length of time for diagnosis is 4.6 years (ref); however this is likely to be even longer for women on average due to the pervasive gender biases that still exist in healthcare and research (ref). According to Virginia Ladd, founder & executive director of the American Autoimmune Related Diseases Association, more than 40% of women eventually diagnosed with a serious autoimmune disease have been told by a doctor that they are a hypochondriac or that they are too preoccupied with their health (ref). On top of this, older women will often face ageism if their AI disease develops later in life (ref), with symptoms like aches and fatigue being dismissed as commonplace in an aging population.
The gender difference has been observed since the earliest descriptions of diseases like multiple sclerosis (MS) over 100 years ago (ref), and as research into autoimmunity has increased over the last two decades, this gender gap has become more well known. Three factors appear to play a part: genetics, hormones, and the environment. Historically, theories have focused on one element playing the central role; however the most recent theoretical developments point to something much more complex. As hormone levels increase and decrease throughout life, this may affect the influence of X chromosomes for example—or it may be that the disease trajectory is altered depending on the part of the body that is impacted (ref).
Female / Male Ratios in Autoimmune Disease
Source: American Autoimmune Related Disease Association
Rheumatoid Arthritis, Multiple Sclerosis & Psoriasis
The most common AI diseases include MS, Crohn’s disease, lupus (systemic lupus erythematosus), type 1 diabetes, rheumatoid arthritis, Hashimoto’s thyroiditis, celiac disease, and psoriasis. The majority of these diseases are more prevalent in women, with the female-to-male ratio of some conditions like Lupus being as high as 9:1. The main AI condition that is more prevalent in men is Type 1 diabetes, and for some the distribution among the genders is more even, such as psoriasis and inflammatory bowel disease.
One condition that predominantly affects women, and particularly later in life, is rheumatoid arthritis (RA), a disease that causes the immune system to attack the lining of the joints. RA affects four times more women than men; and this difference in prevalence only increases with age (ref). Early age at menopause has been linked to subsequent development of RA (ref), and the most severe symptoms related to joint destruction and physical disability are found in older postmenopausal women (ref).
Another condition with a higher prevalence in women is multiple sclerosis (MS), a disease that impacts the brain and spinal cord. MS affects twice as many women as men (ref), and according to a study conducted in the UK, the peak incidence of the disease is between 40 and 55 years old. For older women with MS, increased disease severity has been associated with both earlier age at menopause onset and postmenopausal status (ref), and during this stage of life, the symptoms of MS and menopause can be quite similar, increasing the risk of misdiagnosis.
Finally, although psoriasis is experienced by around the same numbers of men and women, evidence has shown that the decrease in levels of estrogen during menopause can affect the occurrence or exacerbation of the condition (ref).
Common AI Symptoms & Mental Health
Although AI diseases may differ in many ways, there are many symptoms that are non-specific, such as fatigue and pain. In MS patients, fatigue is a symptom in up to 90% of cases (ref) and up to two thirds of patients report MS-related pain. For RA patients, fatigue is a symptom in over 80% of cases (ref) and pain is a prevalent symptom with around 70% of patients in one study reporting it as an area in which they would like to see improvement (ref).
For many women, this lack of specificity can be another contributing factor to a delay in diagnosis as doctors may want to wait and see if symptoms evolve (ref). During midlife and menopause specifically, symptoms of AI disease may change as hormone levels fluctuate, meaning a strong clinician-patient relationship is even more valuable to ensure symptoms are managed effectively (ref).
Another important aspect of living with AI disease that often gets overlooked is the impact on mental health. Many experience depression symptoms alongside the impairments to their physical health as well as lower quality of life (ref) and research has found AI diseases to be linked to a significantly increased risk of mood disorders (ref).
For many patients, worsening physical symptoms can mean a deterioration of their mental health, and conversely, low mood can often mean physical symptoms are exacerbated. Higher numbers of women experience mental health conditions such as depression and anxiety (ref1, ref2) particularly at certain life stages, such as menopause (ref), yet there is often a lack of recognition and discussion around mental health needs in the context of the disease. Many report feeling alone and alienated (ref), and during midlife this experience can be compounded with the often confusing and isolating experience of going through menopause.
Supporting People Living With AI Diseases
Living with an AI disease can affect one’s life in many ways—from managing symptoms to tending to mental health and maintaining relationships. Raising awareness of AI disease and the associated challenges is essential to help both patients and the wider community understand these conditions. Increasing knowledge, conducting more research, and listening to the people affected by AI disease means diagnoses will be more accurate and care will be personalized (ref). Sharing stories and being part of a community is also an excellent way for individuals to help each other and hopefully manage their condition more effectively as a result.
Patients often spend vast amounts of time and effort researching their condition, which can lead to cognitive burnout. Providing a space with access to information and peer support can alleviate the stress and loneliness that many people with AI disease experience. In fact, peer support has been linked to lowering levels of depression and anxiety in MS patients (ref) and improving levels of self-efficacy and physical function in RA patients (ref).
Twill’s Twill Care communities for MS and psoriasis provide tools, information from expert healthcare professionals, symptom trackers, and community support to help individuals understand their condition, make informed treatment decisions, and live a healthy lifestyle.
In a recent survey, 74% of Twill Care users said they
were seeking new treatment options and 34% were seeking better disease management. In addition, a case study showed that Twill Care led to 2x greater Rx conversion rate compared to traditional media.
The Women & Midlife community is purpose-built to support individuals with health concerns and symptoms associated with menopause, including bone health. Members can discuss the physical and emotional changes they’re experiencing with medical experts—and develop meaningful connections with others in the same phase of life.
Twill Care is a key component of how Twill delivers Intelligent Healing™, giving each individual the personalized care they need, when they need it, in the way they want. Partner with us to improve your brand’s patient activation and adherence, and make a real difference in patients' lives.
About the Author
Amanda Woodward & Keren Zimmerman | Amanda Woodward is the Insights Manager and part of the Strategy team at Twill. Amanda joined Twill after moving from London to New York, where she previously worked in clinical research at King’s College London and University College London, as well as in research and knowledge leadership at Mencap, a nonprofit organization supporting individuals with intellectual disabilities. She is passionate about mental health awareness and empowering people through positive behavior change. | Keren is the Chief Product Officer at Twill. She is also an entrepreneur with many years of experience building online consumer products from concept to success. Keren has developed and managed many digital solutions that balance a customer-centric approach with revenue goals. She has served as an executive at Shopping.com, Quigo.com Israel, and Oberon Media, where she focused on building a casual games toolbar business. Previously she founded Personali, an Intelligent Incentives platform enabling retailers and brands to perform precision targeting of shoppers with personalized incentives, accelerating sales growth, optimizing profitability, and increasing customer loyalty. The company operated worldwide with leading names in the industry and drove over $2.5B in revenue growth and profitability for its customers using sophisticated machine learning algorithms combined with behavioral economics.