12/08/2026
🫶
We have heard concerns raised by members of the EDS and HSD community regarding a recent opinion article published by The Times. We have written to The Times to express our concerns about the misconceptions and stigma the article may reinforce about EDS, HSD, disability, and the use of mobility aids.
Public conversations about health and disability matter. They shape how people are perceived, how they are treated, and whether they feel able to seek care. We are concerned that broad narratives about the Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), and other complex chronic illnesses risk reinforcing harmful assumptions about these conditions and the people who live with them.
Every day we hear from people around the world who are challenged for using accessible parking, questioned about their need for mobility aids, told they are too young to be disabled, or have their symptoms dismissed because they do not fit assumptions about what illness or disability should look like. These experiences contribute to delayed diagnosis, barriers to healthcare, discrimination, and poorer quality of life.
The Ehlers-Danlos syndromes and hypermobility spectrum disorders affect people of all ages, sexes, genders, races, ethnicities, body types, and backgrounds. There is no single look to these conditions. Some people have apparent disabilities, while others have disabilities that are largely non-apparent or fluctuate over time.
Many people experience symptoms that vary from day to day, or even throughout the same day. Some are ambulatory wheelchair users, meaning they walk for some activities while using a wheelchair for others. Others may use walking sticks, crutches, braces, or other mobility aids only when needed. Using a mobility aid some of the time does not make a person's disability any less real.
Mobility aids, accessible parking, and other accommodations are tools that reduce pain, improve safety, conserve energy, prevent injury, and enable people to participate in education, employment, family life, healthcare, travel, and their communities with greater independence and dignity.
Greater awareness helps people recognize symptoms, reduces isolation, and encourages people to seek appropriate medical care. Awareness should never be confused with diagnosis, which should always be based on careful, evidence-based clinical assessment by appropriately qualified healthcare professionals.
Words matter. The way the types of EDS and HSD are discussed has real consequences for the people living with these conditions every day. The Ehlers-Danlos Society will continue to challenge stigma, promote evidence-based information, and advocate for everyone affected by the Ehlers-Danlos syndromes and hypermobility spectrum disorders. Every person deserves to be believed, assessed as an individual, and able to access evidence-based care without prejudice, assumptions, or discrimination.
