The Urgent Need for Action
As we celebrate International Women’s Day 2025 and embrace the theme #AccelerateAction, we confront a critical reality: women with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) face systemic gender bias and racial disparities in medicine. These biases can lead to diagnostic delays, dismissive care, and life-threatening consequences.
Over 70% of individuals diagnosed with EDS and HSD are female, yet no specific genetic factors have been identified to fully explain this disparity. Research suggests that female sex hormones, particularly estrogen, may influence symptom severity.
A study by Castori et al. (2010) links the higher prevalence in women to biological factors such as pain sensitivity and hypotonia, while Hugon-Rodin et al. (2016) found that 70.4% of women with hEDS experienced symptoms before puberty, with over half reporting worsening at puberty, suggesting a link between estrogen fluctuations and connective tissue instability. Additionally, one-third of women report increased pain during the perimenstrual period, and 22% of postmenopausal women note symptom improvement, further supporting estrogen’s role in hypermobility.
Despite this, women remain underrepresented in medical research on connective tissue disorders, and there is an urgent need for dedicated studies examining how hormonal changes affect EDS and HSD.
The average time to diagnosis remains 10-12 years, leading to unnecessary suffering and potential complications. A 2023 study by Colin Halverson, PhD (Indiana University School of Medicine) found that individuals with hypermobile EDS (hEDS) receive an average of 10 misdiagnoses before getting an accurate diagnosis. Many were falsely labeled with functional neurological disorders, multiple sclerosis, fibromyalgia, or psychiatric conditions instead of receiving appropriate care.
Gender Bias, Medical Gaslighting, and the Dismissal of Women’s Pain
Women across all racial and socioeconomic backgrounds face the minimization of their pain in healthcare settings. Research shows that women are less likely than men to receive adequate pain relief, with their symptoms often dismissed as psychological or exaggerated (Samulowitz et al., 2018).
Research shows that race, disability, and socioeconomic status compound these disparities, making women of color, disabled women, and those in marginalized communities more likely to be ignored, misdiagnosed, or denied pain relief.
A 2023 thesis by Anja Stelzer (Norwegian University of Life Sciences) explored gender bias and intersectionality in EDS care:
“Female pain was disbelieved, trivialized, normalized, or attributed to mental health. This has led to negative psychological fallout and the experience of institutional betrayal. Furthermore, it led to diagnostic delays which worsened physical health.”
Medical gaslighting has serious consequences, leading to undiagnosed chronic conditions, poor mental health, and increased mortality risks. A 2023 study in Current Psychology found that women who experience medical dismissal are at a significantly higher risk of developing PTSD, depression, and anxiety.
Lara Bloom, President and CEO of The Ehlers-Danlos Society, emphasizes:
“It is a huge disservice to patients when they’re not receiving this management and care, as even the simple validation of being believed goes such a long way—and that is still not happening.”
Racial Bias in Pain Perception and EDS and HSD Care
One of the most persistent and dangerous biases in medicine is the false belief that Black individuals experience less pain than white individuals. A 2016 study published in Proceedings of the National Academy of Sciences (PNAS) found that half of white medical students and residents surveyed endorsed at least one false belief about biological differences between Black and white patients, including the inaccurate notion that Black people have thicker skin or less sensitive nerve endings (Hoffman et al., 2016).
These racial myths are scientifically false but continue to influence pain assessment and treatment recommendations today.
- Black, Latina, and Indigenous women are less likely to receive epidurals for pain relief despite reporting similar or higher pain levels compared to white women (Goyal et al., 2015; Greenwood et al., 2021; Sampson et al., 2023).
- Systemic racism, implicit bias among healthcare providers, and structural barriers contribute to this disparity (Greenwood et al., 2021).
Pregnancy and EDS: The Risks of Bias
Women with EDS can face unique risks during pregnancy. Gender and racial bias extends into maternity care, meaning complications could be missed. Recent research emphasizes the need for specialized maternal care to manage pregnancy risks in all types of EDS.
The Pelvic Disorders Working Group of the International Consortium on Ehlers-Danlos Syndromes (EDS) and Hypermobility Spectrum Disorders (HSD), has recently collaborated on a comprehensive publication of guidelines tailored for healthcare professionals, and individuals with hEDS and HSD to improve care.
Information on how pregnancy in each type of EDS can be found here.
Taking Action: What Needs to Change?
To #AccelerateAction in 2025, healthcare systems must take concrete steps to combat the biases that disproportionately harm women with EDS and HSD..
- Ensure equitable access to healthcare for all women.
- Require gender and racial bias training in medical education to improve pain and healthcare assessments
- Fund research on EDS and HSD that includes women and diverse racial groups.
- Expand studies examining the role of hormones in EDS and HSD.
Time to Listen, Believe, and Act
This International Women’s Day 2025, let’s commit to ending gender and racial bias in EDS and HSD care.
Women of all backgrounds deserve to have their pain believed, their symptoms acknowledged, and their conditions properly treated.
