Many patients hear about the upcoming diagnostic criteria for hypermobile Ehlers-Danlos syndrome (hED) and wonder: Will I lose my diagnosis? Will I have to be re-evaluated? Will the criteria become stricter or broader?
At this point, it is important to remember one key thing:
! The new criteria have not yet been published.
The international initiative known as “Road to 2026” is currently underway and aims to update the entire classification of Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD/TSH). The official release of the new diagnostic framework is scheduled for December 1, 2026.
Why change the 2017 criteria?
The current criteria have helped improve recognition of SEDh, but they have several limitations:
- difficulty in implementation by many doctors;
- significant variability in symptoms depending on age, sex, and medical history;
- significant overlap between SEDh and hypermobility spectrum disorders (HSD);
- insufficient consideration, at times, of the multisystemic manifestations observed in clinical practice.
The stated goal is to improve:
- access to diagnosis;
- consistency across countries;
- the recognition of actual clinical patterns observed in patients;
- care pathways.
What could he change?
At this point, no one outside the international working groups knows the exact content of the future criteria.
However, preliminary studies suggest several possibilities:
- a reassessment of the role of the Beighton score;
- a reflection on the sometimes artificial distinction between SEDh and TSH/HSD;
- greater consideration of the full clinical picture and systemic complications;
- a more practical diagnostic pathway for clinicians.
However, these details remain speculative until the official announcement.
What does this mean for patients who have already been diagnosed?
The most frequently asked question is:
“Will I lose my diagnosis?”
The honest answer today is:
We don't know yet.
Nevertheless, in previous revisions of the classifications, experts have generally avoided systematically questioning diagnoses already established by experienced teams.
It is therefore unlikely that a large number of patients will suddenly have their diagnoses revoked overnight. Future recommendations will focus more on improving future diagnoses than on retroactively invalidating past ones. This issue will nevertheless need to be clarified in official publications.
What patients can do right now
✔️ Keep important medical records.
✔️ Keep a record of your personal and family medical history.
✔️ Continue with the recommended follow-up care regardless of the diagnosis.
✔️ Don’t worry unnecessarily before the official release.
✔️ Be wary of rumors circulating on social media: no final version of the criteria is currently available.
An important message
The new criteria won't change your experience.
Pain, dislocations, fatigue, autonomic dysfunction, digestive problems, or other related symptoms will not disappear simply because a classification changes.
The stated goal of this revision is to better recognize patients and improve their access to care, not to deny their clinical reality.
We will closely monitor the international reports scheduled for late 2026 and will notify you as soon as official data becomes available.
GERSED Belgium.