The Ehlers-Danlos Society Pushing for Change
- timetoheal1210
- Mar 22
- 2 min read
On International Women’s Day (8/03/25) The Ehlers-Danlos Society issued the following statement relating to gas-lighting stating that:
“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”.
As a result, many women face 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 labelled 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 colour, disabled women, and those in marginalised communities face longer diagnostic delays, higher rates of misdiagnosis, and greater difficulty accessing proper care.
Gender and racial bias extend 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 standardised, 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.
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