What are Ehlers-Danlos Syndromes (EDS) and Hypermobility?
Complex, often invisible conditions that affect the whole body, and the lives of those living with them.
What is EDS?
The Ehlers-Danlos syndromes (EDS) are a group of inherited conditions that affect the body’s connective tissue. These are the structures that support and hold the body together.
Connective tissue is found throughout the body, including in joints, skin, blood vessels, organs, and nerves. In people with EDS, this tissue does not function as it should, which can lead to a wide range of symptoms affecting multiple body systems.
There are currently 13 recognised subtypes of EDS, based on the 2017 International Classification. The most common type is Hypermobile EDS (hEDS).
Alongside EDS, many people are diagnosed with Hypermobility Spectrum Disorders (HSD), conditions that can be just as impactful but do not meet the full criteria for hEDS.
What causes eds?
Most types of EDS are genetic, meaning they are caused by changes in genes that affect connective tissue. These can be inherited from on or both parents, or occur spontaneously.
For Hypermobile EDS (hEDS), the exact genetic cause has not yet been identified, which can make diagnosis more challenging.
What are the symptoms?
EDS and HSD are complex, multi-systemic conditions. While joint hypermobility is a key feature, symptoms can affect the whole body and vary significantly from person to person.
Common impacts include:
Joint instability, dislocations and chronic pain
Severe fatigue
Fragile or stretchy skin
Gastrointestinal issues
Cardiovascular and autonomic symptoms (such as dizziness or fainting)
Neurological complications in more severe cases
Many people with EDS and HSD may look well externally, making these conditions largely invisible.
Why is diagnosis so difficult?
On average, people can wait many years for a diagnosis.
This is often due to:
Lack of awareness among healthcare professionals
Symptoms affecting multiple systems
Conditions being misunderstood or dismissed
Delayed diagnosis can lead to worsening health, preventable complications, and significant emotional and financial strain.
How many people does it affect?
EDS has historically been described as a rare condition. 12 types of EDS are considered rare, with prevalences ranging from 1 in 20,000 to 1 in 1,000,000 people.
Emerging research suggest that Hypermobile EDS (hEDS) and HSD may affect around 1-2% of the population.
Lack of awareness of EDS and lack of funding leads many sufferers to be misdiagnosed or undiagnosed.
Is there a cure?
There is no cure for EDS or HSD.
A delay to diagnosis causes unnecessary suffering, irreversible damages to the body that could potentially cause disabling and life-threatening complications.
That is why an early diagnosis is paramount.
The earlier EDS can be diagnosed, the sooner:
measures can be initiated to prevent further permanent irreversible damage to joints and ligaments
evaluation risks of potential organ dissection or rupture can be investigated
identification of other co-occurring conditions and disorders can be treated and managed
Why this matters
Many people living with EDS and HSD are unable to access the specialist care, investigations, and treatments they need through the NHS.
As a result, patients are often forced to fund their own medical care.
Mind Body EDS exists to bridge this gap.
Through our grant programme, we provide financial support to help individuals access:
Specialist consultations
Diagnostics and imaging
Treatment and surgery
Therapies and medical equipment
early diagnosis saves lives
The earlier EDS or HSD is recognised, the sooner people can:
Prevent long-term damage
Access appropriate care
Manage associated conditions
Improve quality of life