What Is Hypermobile Ehlers-Danlos Syndrome (hEDS)?

What Is Hypermobile Ehlers-Danlos Syndrome (hEDS)?

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    Introduction

    Have you ever been told you're "double-jointed" or unusually flexible? While many people are naturally flexible, for some, joint hypermobility is part of a more complex medical condition called Hypermobile Ehlers-Danlos Syndrome (hEDS).

    hEDS is a hereditary connective tissue disorder that affects much more than the joints. Because connective tissue is found throughout the body, hEDS can influence the skin, muscles, ligaments, blood vessels, digestive system, nervous system, and more.

    Many people spend years searching for answers before receiving a diagnosis because symptoms often develop gradually and affect multiple body systems. Fortunately, awareness of hEDS has grown significantly in recent years, helping more people receive earlier recognition and appropriate care.

    What Is Hypermobile Ehlers-Danlos Syndrome?

    Hypermobile Ehlers-Danlos Syndrome (hEDS) is one of thirteen recognized types of Ehlers-Danlos Syndrome (EDS), a group of inherited connective tissue disorders.

    Connective tissue acts as your body's "support system." It provides strength, flexibility, and structure to joints, ligaments, tendons, skin, blood vessels, and many internal organs.

    In people with hEDS, this connective tissue is more elastic and less stable than it should be. As a result, joints may move beyond their normal range of motion, increasing the risk of pain, instability, sprains, partial dislocations (subluxations), and full dislocations.

    Unlike many other types of EDS, researchers have not yet identified the specific genetic cause of hEDS, making diagnosis based primarily on clinical evaluation rather than genetic testing.

    How Common Is hEDS?

    The exact number of people living with hEDS is still being studied.

    Historically, hEDS was thought to be rare. However, growing awareness suggests it is likely underdiagnosed rather than uncommon.

    hEDS affects people of all genders and ages, although women are diagnosed more frequently. Symptoms often begin during childhood or adolescence but may not be recognized until adulthood.

    Because many symptoms overlap with other conditions, diagnosis is often delayed by several years.

    Common Symptoms

    Symptoms vary widely from person to person and can range from mild to significantly disabling.

    Common symptoms include:

    • Joint hypermobility ("double-jointedness")

    • Frequent joint sprains

    • Joint instability

    • Partial or full joint dislocations

    • Chronic joint pain

    • Muscle pain

    • Fatigue

    • Soft or velvety skin

    • Easy bruising

    • Delayed healing after injuries

    • Chronic headaches or migraines

    • Neck and back pain

    • Poor balance or coordination

    • Digestive problems

    • Brain fog

    Many people also experience symptoms related to other body systems because connective tissue is found throughout the body.

    What Causes hEDS?

    hEDS is believed to be a genetic condition that affects connective tissue.

    Although researchers know the condition tends to run in families, the exact genetic mutation responsible for hEDS has not yet been identified.

    Current research suggests that multiple genes may contribute, making hEDS more complex than many other inherited connective tissue disorders.

    Importantly, nothing a person does causes hEDS. It is not the result of exercise, injury, or lifestyle choices.

    How Is hEDS Diagnosed?

    Because there is currently no genetic test for hEDS, diagnosis is based on internationally accepted clinical criteria.

    Healthcare providers may evaluate:

    • Generalized joint hypermobility

    • Personal history of joint instability or chronic pain

    • Family history

    • Skin characteristics

    • Other connective tissue features

    • Conditions that may mimic hEDS

    Your healthcare provider may also perform a Beighton Score, a standardized assessment that measures joint flexibility.

    Because symptoms affect many body systems, evaluation may involve multiple specialists before a diagnosis is made.

    How Is hEDS Managed?

    There is currently no cure for hEDS, but many people successfully manage symptoms with a comprehensive treatment plan.

    Management may include:

    • Physical therapy focused on joint stabilization

    • Low-impact strength training

    • Activity modification

    • Joint protection strategies

    • Pain management

    • Occupational therapy

    • Good nutrition

    • Adequate hydration

    • Quality sleep

    • Bracing or supportive devices when appropriate

    • Treatment of associated conditions such as POTS or gastrointestinal disorders

    The goal is not to avoid movement but to improve strength, stability, and confidence while reducing injury risk.

    Living With It

    Living with hEDS often means becoming very aware of your body's unique needs.

    Something as simple as carrying groceries, sitting at a desk for several hours, or sleeping in an awkward position may lead to pain that others don't expect. You may have learned to ignore symptoms for years because you assumed everyone experienced them.

    Many people with hEDS eventually realize that what they considered "normal"—frequent sprains, joints slipping out of place, chronic pain, or constant fatigue—is not something everyone experiences.

    Receiving a diagnosis can be emotional. For some, it brings relief after years of unanswered questions. For others, it begins a period of learning how to move, exercise, and care for their bodies differently.

    The encouraging news is that many people with hEDS improve significantly when they focus on building strength, protecting their joints, and working with healthcare professionals who understand connective tissue disorders.

    Common Misconceptions

    "Being flexible is always a good thing."

    Flexibility can be beneficial, but excessive joint mobility without adequate stability may increase the risk of pain and injury.

    "You're just out of shape."

    Many people with hEDS are active and motivated. Their symptoms are caused by connective tissue differences—not a lack of effort.

    "You'll grow out of it."

    While symptoms may change throughout life, hEDS is a lifelong connective tissue disorder.

    "Exercise will make everything worse."

    Appropriately designed exercise is actually one of the most important parts of managing hEDS. Strengthening the muscles around joints can improve stability and reduce injury risk.

    "Everyone with hEDS has severe symptoms."

    Symptoms vary widely. Some people have relatively mild joint hypermobility, while others experience widespread pain and significant functional limitations.

    Frequently Asked Questions

    Is hEDS hereditary?

    Yes. hEDS tends to run in families, although researchers are still working to identify the exact genetic cause.

    Can hEDS affect organs besides the joints?

    Yes. Because connective tissue exists throughout the body, hEDS may affect the skin, digestive system, nervous system, bladder, and other organs.

    Can people with hEDS exercise?

    Yes. Most experts recommend individualized strengthening and stabilization exercises under the guidance of knowledgeable healthcare professionals.

    Is hEDS the same as being double-jointed?

    No. Many people are naturally flexible without having hEDS. hEDS involves generalized joint hypermobility along with additional symptoms and diagnostic criteria.

    Is hEDS curable?

    There is currently no cure, but many people experience meaningful improvements in function and quality of life with appropriate management.

    Conditions That Commonly Occur Alongside hEDS

    Although not everyone with hEDS develops additional conditions, research has found several disorders occur more frequently in people with hEDS.

    These include:

    • Postural Orthostatic Tachycardia Syndrome (POTS)

    • Mast Cell Activation Syndrome (MCAS)

    • Functional gastrointestinal disorders

    • Chronic migraine

    • Temporomandibular joint (TMJ) disorders

    • Pelvic floor dysfunction

    • Anxiety disorders

    • Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

    If you notice symptoms involving multiple body systems, discuss them with your healthcare provider rather than assuming they are automatically related to hEDS.

    Where to Go Next

    If you're learning about hEDS, you may also enjoy:

    • What Is Dysautonomia?

    • What Is Chronic Inflammation?

    • PEM vs. Fatigue

    • Understanding Energy Envelope Theory

    • The Spoon Theory Explained

    • Living with an Invisible Disability

    • Connective Tissue Explained (coming soon)

    • Collagen Explained (coming soon)

    • Exercise for hEDS (coming soon)

    • Joint Protection Strategies (coming soon)

    Key Takeaways

    • hEDS is a hereditary connective tissue disorder that affects joints and many other body systems.

    • Symptoms often include joint hypermobility, instability, chronic pain, fatigue, and connective tissue-related complications.

    • There is currently no genetic test for hEDS, so diagnosis is based on clinical criteria.

    • Strength training, joint protection, physical therapy, and individualized care play important roles in symptom management.

    • Many people with hEDS lead active, fulfilling lives by learning how to support their bodies and manage symptoms effectively.

    Learn More

    The Ehlers-Danlos Society
    Hypermobile Ehlers-Danlos Syndrome (hEDS)
    https://www.ehlers-danlos.com/heds/

    GeneReviews® – National Center for Biotechnology Information (NCBI)
    Hypermobile Ehlers-Danlos Syndrome
    https://www.ncbi.nlm.nih.gov/books/

    Hope for the Future

    Research into hEDS has accelerated dramatically over the past decade. Scientists around the world are working to better understand the genetics of the condition, improve diagnostic criteria, and develop more effective treatments.

    Healthcare providers are also becoming increasingly aware of the connections between hEDS, dysautonomia, mast cell disorders, chronic pain, and gastrointestinal conditions. This growing understanding is leading to earlier diagnoses, more comprehensive care, and greater recognition of the challenges people with hEDS face.

    While there is still much to learn, the future is encouraging. Continued research offers hope for improved diagnostic tools, targeted therapies, and a better quality of life for people living with hEDS.

    Medical Disclaimer

    This article is intended for educational purposes only and should not be considered medical advice. It is not a substitute for professional medical evaluation, diagnosis, or treatment. If you believe you may have hypermobile Ehlers-Danlos syndrome or another connective tissue disorder, consult a qualified healthcare professional for a comprehensive evaluation and personalized care plan.

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