Frequently Asked Questions About hEDS

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Understanding hEDS

What is hypermobile Ehlers-Danlos syndrome (hEDS)?

Hypermobile Ehlers-Danlos syndrome (hEDS) is a hereditary connective tissue disorder that affects the body's collagen and supporting structures. While joint hypermobility is its most recognized feature, hEDS can affect many parts of the body, including muscles, skin, the digestive system, the autonomic nervous system, and more.

Is hEDS a rare disease?

hEDS is often described as a rare disease, but many experts believe it is significantly underdiagnosed. Because awareness remains limited and symptoms can vary widely, many people spend years—or even decades—without a diagnosis.

Is hEDS genetic?

Yes. hEDS tends to run in families and is generally considered an inherited condition. Unlike most other Ehlers-Danlos syndromes, however, the specific genetic cause of hEDS has not yet been conclusively identified.

Can someone have hEDS even if genetic testing is normal?

Yes. There is currently no genetic test that can confirm or rule out hEDS. Diagnosis is based on clinical criteria, family history, and physical examination.

Is hEDS just being "double-jointed"?

No. Many people with hEDS are hypermobile, but hEDS is far more than flexible joints. It is a complex, multisystem condition that can cause chronic pain, fatigue, joint instability, gastrointestinal issues, autonomic dysfunction, and many other symptoms.

What are the most common symptoms of hEDS?

Common symptoms include joint hypermobility, chronic pain, fatigue, frequent sprains, subluxations or dislocations, dizziness when standing, digestive problems, poor proprioception, headaches, and sleep disturbances. Symptoms vary considerably from person to person.

What is the difference between hEDS and HSD?

Hypermobility Spectrum Disorder (HSD) and hEDS share many symptoms and clinical features. In some cases, the distinction depends on whether a person meets specific diagnostic criteria. Researchers continue to study the relationship between these conditions.

Can children have hEDS?

Yes. Symptoms often begin during childhood, although diagnosis may not occur until adolescence or adulthood. Children may experience hypermobility, frequent injuries, fatigue, pain, coordination difficulties, or gastrointestinal symptoms.

Other Types of Ehlers-Danlos Syndrome

Is hEDS the only type of Ehlers-Danlos syndrome?

No.

Ehlers-Danlos syndrome (EDS) is not a single condition but a group of hereditary connective tissue disorders. There are currently 13 recognized types of EDS, each with its own clinical features and genetic causes.

Hypermobile Ehlers-Danlos syndrome (hEDS) is the most common type.

What are the main types of EDS?

The most commonly discussed types include:

• Hypermobile EDS (hEDS) – characterized primarily by joint hypermobility, chronic pain, and multisystem symptoms.
• Classical EDS (cEDS) – often associated with highly stretchable skin, abnormal scarring, and joint hypermobility.
• Vascular EDS (vEDS) – a rare but potentially serious form involving fragile blood vessels and internal organs.
• Kyphoscoliotic EDS (kEDS) – characterized by severe muscle weakness and progressive spinal curvature.
• Myopathic EDS (mEDS) – associated with congenital muscle weakness and joint instability.

Several other rare subtypes also exist.

How is hEDS different from other forms of EDS?

Unlike most other EDS subtypes, hEDS currently has no confirmed genetic marker that can be used for diagnosis.

Most other forms of EDS can be confirmed through genetic testing, whereas hEDS remains a clinical diagnosis based on symptoms, medical history, and physical examination.

Is vascular EDS the same as hypermobile EDS?

No.

Vascular EDS (vEDS) and hypermobile EDS (hEDS) are distinct conditions.

While both belong to the Ehlers-Danlos syndrome family, vascular EDS is caused by specific genetic variants affecting type III collagen and carries risks that are generally not associated with hEDS, including arterial and organ rupture.

People who meet the diagnostic criteria for hEDS do not automatically have vascular EDS.

Can someone be tested for other forms of EDS?

Yes.

Genetic testing is available for most EDS subtypes other than hEDS.

Healthcare professionals may recommend genetic evaluation when a person's symptoms suggest a subtype other than hEDS or another hereditary connective tissue disorder.

Why is it important to know which type of EDS someone has?

Different EDS subtypes can have different symptoms, complications, inheritance patterns, and management recommendations.

Obtaining the most accurate diagnosis possible helps patients and healthcare professionals make informed decisions about monitoring, treatment, and long-term care.

Should I be worried that I have vascular EDS?

Not necessarily.

Most people diagnosed with hEDS do not have vascular EDS. If your medical history, family history, or clinical features suggest another EDS subtype, a genetics specialist can help determine whether further evaluation is appropriate.

Diagnosis and Recognition

How is hEDS diagnosed?

hEDS is diagnosed using internationally recognized clinical criteria that evaluate joint hypermobility, systemic connective tissue features, family history, and the exclusion of alternative diagnoses. There is currently no laboratory test that can confirm hEDS.

Why do so many people with hEDS struggle to get diagnosed?

Many symptoms of hEDS overlap with more common conditions, and awareness remains limited among healthcare professionals. Because standard medical tests may appear normal, patients are sometimes misdiagnosed or told that their symptoms cannot be explained.

Why do medical tests often come back normal?

Many of the symptoms associated with hEDS are caused by connective tissue dysfunction, joint instability, autonomic dysfunction, or altered biomechanics—problems that may not appear on standard blood tests, X-rays, or imaging studies.

Normal test results do not necessarily mean that symptoms are not real.

Is hEDS psychosomatic?

No. hEDS is a recognized hereditary connective tissue disorder. While stress and emotional factors can influence how symptoms are experienced—as they can with many medical conditions—the condition itself is not psychosomatic.

Can someone with hEDS look healthy?

Absolutely.

Many people with hEDS appear healthy on the outside, even while living with significant pain, fatigue, dizziness, gastrointestinal symptoms, or physical limitations.

This is one reason hEDS is often considered an invisible illness.

What does "invisible illness" mean?

An invisible illness is a medical condition whose symptoms are not immediately obvious to others.

People living with invisible illnesses may face misunderstanding, skepticism, or judgment because their challenges cannot be easily seen. hEDS is one example of an invisible illness, but many others exist.

Why does awareness of hEDS matter?

Because delayed recognition has consequences.

When symptoms go unexplained, people may spend years searching for answers, doubting themselves, or being dismissed by others. Earlier recognition can lead to better support, more appropriate care, and a better quality of life.

Living with hEDS

Can hEDS cause chronic pain?

Yes. Chronic pain is one of the most common and disabling symptoms of hEDS. Pain may result from joint instability, muscle overcompensation, repeated injuries, nerve irritation, or altered pain processing.

Can hEDS cause fatigue?

Yes. Many people with hEDS experience profound fatigue that is disproportionate to their activity level. Fatigue may be related to pain, sleep disturbances, autonomic dysfunction, increased muscular effort to stabilize joints, or a combination of factors.

What is the connection between hEDS and POTS?

Postural Orthostatic Tachycardia Syndrome (POTS) is a form of autonomic dysfunction that appears more frequently in people with hEDS than in the general population. Symptoms may include dizziness, rapid heart rate, lightheadedness, brain fog, and exercise intolerance.

Can hEDS affect digestion?

Yes. Many people with hEDS experience gastrointestinal symptoms such as reflux, nausea, bloating, constipation, diarrhea, abdominal pain, or delayed gastric emptying. The severity and causes vary between individuals.

Can hEDS affect mental health?

Living with chronic pain, disability, uncertainty, and medical misunderstanding can have a significant impact on mental health. Anxiety and depression are common among people with hEDS, but hEDS itself is not a psychological condition.

Can hEDS cause disability?

Yes.

While symptom severity varies widely, hEDS can significantly affect mobility, education, employment, social participation, and daily activities. Some people remain highly functional, while others require accommodations, mobility aids, or long-term support.

Can hEDS become more severe over time?

Symptoms often change throughout life. Some people experience increasing pain, fatigue, or functional limitations over time, while others improve significantly with proper management and support.

Is hEDS life-threatening?

For most people, hEDS is not considered a life-threatening condition. However, it can be profoundly disabling and can significantly affect education, employment, relationships, mental health, and overall quality of life.

Treatment and Management

Is there a cure for hEDS?

There is currently no cure for hEDS. Treatment focuses on symptom management, injury prevention, improving quality of life, and addressing associated conditions.

Can hEDS be treated?

While hEDS cannot be cured, many symptoms can be managed. Treatment may include physiotherapy, occupational therapy, pain management, lifestyle adjustments, bracing, autonomic support strategies, and treatment of associated conditions.

Should people with hEDS exercise?

In most cases, yes. Appropriate exercise is often an important part of managing hEDS. The goal is usually to improve stability, strength, endurance, and proprioception while minimizing injury risk. Exercise programs should ideally be adapted to the individual's needs.

Families and Healthcare Professionals

How can family members support someone with hEDS?

One of the most important things family members can do is listen and believe.

Support may also include learning about the condition, helping to navigate healthcare systems, respecting physical limitations, celebrating small victories, and understanding that symptoms may fluctuate from day to day.

Validation can make a meaningful difference.

What should healthcare professionals know about hEDS?

Healthcare professionals do not need to know everything about hEDS to make a difference.

Listening carefully, acknowledging uncertainty, recognizing the limitations of standard testing, and taking patients' experiences seriously can have a profound impact on care.

For many patients, feeling heard is the first step toward receiving appropriate support.