Reply from Ehlers Danlos Society

 

The Ehlers-Danlos Society has acknowledged being informed about the petition and has stated that there will be an investigation. I have included their email response for transparency.

Once again, we are calling for meaningful leadership changes and a change in direction for the organization. People living with Hypermobile EDS deserve support that recognizes the reality of vulnerable joints and ligaments—not repeated, one-size-fits-all advice to simply “exercise more.”

While strengthening muscles is beneficial, muscle strengthening cannot repair or fully compensate for damaged or unstable joints and ligaments. For people with significant joint damage or instability, continually being encouraged to push through with exercise without appropriate safeguards can increase pain, cause further injury, and contribute to greater disability. The Ehlers-Danlos Society should recognize this reality and provide more balanced, individualized guidance.

We also deserve greater support and acceptance for the use of braces, mobility aids, and other assistive devices when they are medically appropriate. These tools should not be treated as failures or something to be avoided at all costs. For many people with severe EDS-related joint instability, they are essential tools for protecting vulnerable joints, maintaining function, and preventing further damage.

We are also deeply concerned that the Society's public focus appears to center heavily on the more visible, able-bodied Hypermobile EDS community while people living with severe disability—and people with other EDS subtypes—remain overlooked. This imbalance can contribute to misinformation and create the false impression that EDS is primarily a condition that can be managed through exercise and lifestyle changes alone.

Diagnosis matters, but diagnosis cannot be the finish line. People who are already living with significant disability need meaningful support, appropriate clinical guidance, and practical options for protecting their bodies. An organization representing the entire EDS community must advocate for all people with EDS, including those whose symptoms are severe, disabling, and complex.

From the outside, it is difficult not to question whether perspectives rooted in an able-bodied experience are being prioritized over the experiences of people with more severe disease and disability. We need leadership that listens to those people rather than dismissing their lived experiences.

Why are people with significant joint and ligament damage being left without adequate options when their muscles cannot compensate for that damage? Why are braces, mobility aids, and other forms of support so often treated as a last resort rather than legitimate tools that can help protect vulnerable bodies?

We are asking the Ehlers-Danlos Society to listen to the people who are most affected, acknowledge the limitations of a one-size-fits-all approach, and make meaningful changes so that every person with EDS—including those living with severe disability—is represented, supported, and respected.

———————

Dear Jennifer,

Thank you for taking the time to set out your concerns and provide the information relating to your complaint.

Dr Melanie MacLeod, Chair of the Board of Directors and Trustees, has reviewed the complaint and related correspondence and has informed us that she will personally conduct the investigation.

She has asked us to pass on her appreciation for the time you have taken to bring your concerns forward.

We will be in touch with the outcome of the investigation no later than Friday, 21 August 2026.

Best

Lauren

The Ehlers-Danlos Society