As healthcare providers, we have a duty to educate ourselves and give individuals with hEDS the care they deserve. Right now, we are failing them—and that’s unacceptable. We must do better.
This International Women’s Day, We Must #AccelerateAction for Women with EDS & HSD. For too long, women with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) have been ignored, misdiagnosed, and gaslit by the medical system. The result? Years of unnecessary suffering, preventable complications, and even life-threatening consequences. ● Women wait an average of 10-12 years for an EDS or HSD diagnosis. Many spend decades dismissed before finally receiving answers. ● Women’s pain is systematically underestimated—brushed off as stress, anxiety, or “hormones” instead of being properly investigated and treated. This not only delays diagnosis for physical conditions like EDS and HSD but also creates a harmful cycle where women hesitate to seek help for mental health concerns—fearing they will be dismissed yet again. ● A 2023 study found that individuals with hypermobile EDS (hEDS) receive an average of 10 misdiagnoses—often falsely labeled with functional neurological disorders, multiple sclerosis, fibromyalgia, or psychiatric conditions (Halverson et al.). ● Racial and disability bias in medicine is worsening this crisis. Women of color, disabled women, and those in marginalized communities face longer diagnostic delays, higher rates of misdiagnosis, and greater difficulty accessing proper care. ● Gender and racial bias extends into maternity care, meaning complications could be missed. Gender and racial bias in healthcare are costing lives. This #IWD2025, we need real change: ?Mandatory training for healthcare providers on gender, racial, and disability disparities in diagnosis, pain management, and treatment access. ?Implementation of standardized, evidence-based medical guidelines to ensure gender-, race-, and disability-inclusive care. ?Equitable access to pain management, maternal care, and clinical research that includes diverse populations. Women of all backgrounds deserve to have their pain believed, their symptoms acknowledged, and their conditions properly treated. https://lnkd.in/e5wcMHcq #EhlersDanlosSyndrome #HypermobilitySpectrumDisorder #EDS #HSD #HealthEquity #BelieveWomen #MedicalGaslighting #GenderBias #RacialBias #Healthcare