By Dr. Stéphane Daens, President of GERSED Belgium.
The term "fad disease" is still too often used to describe Ehlers-Danlos syndrome (EDS).
This statement is false, unscientific, and contributes to the trivialization and delay in treatment for thousands of patients.
It is important to set the record straight.
An ancient and well-identified genetic disease?
Ehlers-Danlos syndrome is a group of complex, hereditary genetic disorders of the connective tissue, first described in the late 19th century by doctors Alexander Chernogobov and then Edvard Ehlers. Hippocrates and Herodotus described a hypermobile people with exuberant scars 2,400 years ago in Eastern Europe, the Scythians (Ukraine).
A genetic disease cannot appear as a result of a fad.
Knowledge has evolved, but the disease existed long before it was recognized as it is today.
International diagnostic criteria?
In 2017, an international classification was published, based on a multidisciplinary consensus (geneticists, internists, rheumatologists, researchers).
These criteria now enable:
- Better patient identification
- A more consistent approach to diagnosis
- Recognition of long-ignored conditions, particularly hypermobile EDS
Why is SED being discussed more today?
The increase in the number of diagnoses does not mean that the disease is new.
It can be explained by:
- Better training for professionals
- Standardization of criteria
- Recognition of multisystem presentations
- The gradual end of widespread underdiagnosis
This phenomenon is well known in medicine and has already been linked to numerous conditions (autoimmune diseases, endometriosis, autism spectrum disorders, etc.).
—-> We're talking about diagnostic catch-up, not a passing trend!
A real multisystemic disease?
SED is not a list of vague or subjective symptoms.
This is a systemic disorder affecting connective tissue and even the neuroimmune system, which may involve:
- Joints, ligaments, tendons, muscles, etc.
- The skin, fascia, etc.
- The vascular system
- The autonomic nervous system
- The digestive, respiratory, urogenital systems, etc.
- Chronic pain and fatigue
- Activation of mast cells (MCDs)
- Proprioception
- The sensory organs (dys-sensory perception)
- Neuroatypicality and neurodivergence, ADHD, DYS-, ASD, HPI, and emotional HP.
- Small fiber neuropathy
- Etc.
These effects have a pathophysiological consistency that is documented in scientific literature.
Why is this expression problematic?
Describing SED as a "trendy disease":
- Don't deny the reality experienced by patients!
- Delays diagnosis and treatment!
- Maintain medical biases!
- Has no scientific value!
This expression most often translates as:
- A lack of training
- Discomfort when faced with complex illnesses
- A lack of knowledge about connective tissue diseases
What does science say?
✔ SED is a complex genetic disorder that is recognized.
✔ The diagnostic criteria are international and validated—and will likely be revised soon thanks to Road 2026 from the EDS Society (end of 2026).
✔ The increase in diagnoses reflects greater awareness.
✔ It is neither a trend nor a societal phenomenon.
The role of associations such as GERSED Belgium?
Associations such as GERSED Belgium play an essential role:
- Reliable information
- Awareness
- Dialogue with professionals
- Fighting misconceptions
To inform is already to treat.
In summary
– Ehlers-Danlos syndrome is not a fashionable disease.
– It is a complex genetic disorder, hereditary but not exclusively so, long-standing, and long underdiagnosed.
– The science is clear. It's time for medical discourse to be clear too.
Dr. Stéphane Daens and GERSED Belgium