What Is Ehlers-Danlos Syndrome? Signs to Watch For

Ehlers-Danlos Syndrome, commonly known as EDS, isn’t your average disorder—it’s a group of inherited conditions that affect the connective tissues in the body. Think of connective tissue as the glue holding everything together—your skin, joints, blood vessels, and even internal organs. When this glue is faulty, you start to see a range of strange and often debilitating symptoms.

EDS is genetic, which means it's passed down through families. It’s not contagious, not caused by lifestyle choices, and not something you “develop” later in life randomly. Some people have mild symptoms, while others experience life-altering complications. What’s tricky is that EDS doesn’t always look the same from one person to another. In fact, there are multiple types, each with its own set of defining characteristics. That’s why recognizing the symptoms is so important—it’s the first step to getting the help and support needed.

The signs may appear subtle at first. For example, someone may just seem more “flexible” than others or bruise a bit too easily. But over time, these signs can grow into something more serious—like chronic joint pain, dislocations, or even organ complications. That’s why EDS is often underdiagnosed or misdiagnosed as something else like fibromyalgia or chronic fatigue syndrome.

Overview of the Different Types

EDS isn’t one-size-fits-all. There are 13 recognized subtypes, each associated with a specific genetic mutation. The three most common types are:

1. Classical EDS (cEDS) – Known for extremely stretchy skin and severe scarring.

2. Hypermobile EDS (hEDS) – The most common type, marked by joint instability and chronic pain.

3. Vascular EDS (vEDS) – The most severe form, potentially life-threatening due to fragile blood vessels and organ rupture risks.

Other rarer forms include Kyphoscoliotic EDS, Arthrochalasia EDS, and Dermatosparaxis EDS. Each type has a unique set of symptoms and varying degrees of severity. Some may affect mobility more than others, while some can compromise internal organ function. The diversity in symptoms makes it crucial to look at the bigger picture rather than just isolated signs.

General Symptoms Across All EDS Types

Joint Hypermobility

One of the most hallmark symptoms across almost all forms of EDS is joint hypermobility. This is more than just being able to do the splits or bend your fingers backward—it’s when your joints move beyond the normal range of motion, often causing pain, instability, and injury.

People with hypermobile joints may experience:

• Frequent joint dislocations or subluxations (partial dislocations)

• Chronic joint pain or aching, especially after physical activity

• "Popping" or "clicking" sounds from joints

• Early onset arthritis due to joint wear and tear

Children may be praised for being double-jointed, but this flexibility can turn into a lifelong problem. Over time, the joints become less stable, leading to injury, inflammation, and persistent pain. Simple tasks like typing, walking, or opening a jar can become painful challenges.

Worse still, people with joint hypermobility often struggle to get taken seriously. It’s not unusual for doctors to dismiss the symptoms as growing pains or anxiety. But unchecked joint hypermobility can lead to severe physical limitations and a serious drop in quality of life.

Skin Hyperextensibility

If you gently tug on the skin of someone with EDS, it may stretch more than usual—sometimes alarmingly so. This is known as skin hyperextensibility and is most pronounced in the classical types of EDS. But it can appear in other types as well.

This stretchy skin isn't just unusual—it’s also fragile. It may:

• Tear easily with minimal trauma

• Heal slowly and often with abnormal scarring

• Develop atrophic (sunken or paper-thin) scars, especially on the knees, elbows, and forehead

Imagine trying to live an active lifestyle with skin that behaves like tissue paper. Even minor scrapes can turn into large wounds. The fragility of the skin also means you have to be cautious during medical procedures like stitches or surgeries, as healing can be complicated.

This symptom, while visually striking, isn’t always present in all EDS types, which can make diagnosis tricky. Still, if paired with joint hypermobility, it’s a strong indicator something more systemic is going on.

Fragile and Bruisable Skin

Many people with EDS find themselves covered in mysterious bruises. Even the lightest bump against a doorframe can result in a black-and-blue mark. In vascular EDS, the issue is even more pronounced—small blood vessels may rupture under the skin spontaneously or from minor trauma.

Symptoms of fragile, bruisable skin can include:

• Frequent, unexplained bruises

• Visible veins under thin skin

• Delayed wound healing

• Skin that feels soft, velvety, or unusually thin

These symptoms aren’t just cosmetic. In the more severe types of EDS, internal bleeding or ruptured organs can become life-threatening emergencies. Imagine waking up with a bruise and not knowing if it was just from sleeping oddly or something much more dangerous.

Understanding the skin’s behavior in EDS is essential not only for diagnosis but also for managing everyday risks. Patients often need to take extra care during sports, daily chores, and even medical treatments.

Type-Specific Symptoms

Classical EDS Symptoms

Classical EDS (cEDS) is the form most often associated with stretchy, doughy skin and extreme joint hypermobility. People with this type often have very visible signs, making it one of the easier types to diagnose—though that doesn’t always mean early diagnosis happens.

Key features include:

• Hyperelastic skin that springs back slowly

• Widespread, severe bruising with minimal trauma

• Soft, velvety skin texture

• Atrophic scars that look like cigarette burns

• Joint dislocations, especially in larger joints like the shoulders and knees

It’s not just the joints and skin that are affected. People with cEDS often face dental issues, fragile gums, and problems with wound closure after surgery. Scar tissue may also overgrow or become lumpy, which can be both painful and cosmetically distressing.

Despite its clear signs, cEDS is still frequently misunderstood or mistaken for other conditions like lupus, Marfan syndrome, or even simple clumsiness. But once properly identified, patients can take steps to manage symptoms, reduce injury risk, and live more comfortably.

Hypermobile EDS Symptoms

Hypermobile Ehlers-Danlos Syndrome (hEDS) is the most common form of EDS, yet it’s also the hardest to diagnose. Why? Because unlike other types, there’s no definitive genetic test for it—so it’s usually diagnosed based on symptoms alone. And those symptoms? They can vary wildly from person to person.

The most common features of hEDS include:

• Extreme joint flexibility, especially in the knees, fingers, shoulders, and hips

• Frequent joint dislocations or subluxations (partial dislocations)

• Chronic joint and muscle pain, often beginning in childhood or adolescence

• Fatigue that doesn’t go away with rest

• Frequent sprains and injuries from minor physical activity

Many individuals with hEDS also experience soft, slightly stretchy skin and poor wound healing, though not as pronounced as in classical EDS. One of the key struggles is chronic pain, which can affect mobility, mood, and overall quality of life. This pain can be widespread or concentrated in certain joints, and it often worsens with overexertion or stress.

Beyond the physical symptoms, hEDS can deeply affect a person’s mental health. Constant pain and lack of a clear diagnosis can lead to anxiety, depression, and even trauma from years of being misunderstood by healthcare professionals. People often report feeling like their bodies are “falling apart” or that they’re much older than their years.

Vascular EDS Symptoms

Vascular EDS (vEDS) is rare but incredibly serious. It involves a mutation in the COL3A1 gene, which affects the body’s type III collagen—a critical building block in blood vessels and internal organs. Unlike other types of EDS, where symptoms are mostly external, vEDS is internal and potentially life-threatening.

Some hallmark symptoms include:

• Thin, translucent skin with visible veins (especially on the chest and abdomen)

• Easy and severe bruising

• Fragile blood vessels that may rupture spontaneously

• Arterial dissections or aneurysms

• Organ rupture, particularly the intestines, uterus, or bladder

• Facial features like a thin nose, small chin, and deep-set eyes

One of the scariest aspects of vEDS is how unpredictable it can be. A person might appear healthy and active but could suffer a sudden arterial rupture without warning. Women with vEDS face high risks during pregnancy due to the potential for uterine rupture.

That’s why early diagnosis is vital. With proper monitoring, lifestyle modifications, and sometimes surgical interventions, complications can be reduced. Genetic counseling and imaging scans are often recommended to track vascular health over time.

Kyphoscoliotic EDS Symptoms

Kyphoscoliotic EDS (kEDS) is characterized by a severe curvature of the spine, along with muscle weakness and extreme joint looseness. It’s typically apparent early in life, sometimes even at birth.

Key symptoms include:

• Progressive scoliosis (abnormal spine curvature) beginning in infancy or childhood

• Muscle hypotonia (low muscle tone) leading to delayed motor development

• Fragile eyes with a high risk of globe rupture

• Skin fragility and abnormal scarring

• Joint dislocations and instability

• Osteopenia or osteoporosis (weak bones)

Children with kEDS may take longer to sit, crawl, or walk due to their muscle weakness. As they grow, the spinal curvature often worsens, sometimes requiring surgical correction. Eye exams are crucial, as the risk of globe rupture can lead to permanent vision loss.

This type of EDS often results from mutations in the PLOD1 or FKBP14 genes. Though it’s rarer than hypermobile or classical EDS, the symptoms can be far more debilitating and visibly apparent. Consistent monitoring, physical therapy, and orthotic support are essential parts of managing daily life.

Arthrochalasia and Dermatosparaxis Types

These are among the rarest and most severe forms of EDS. They each have distinct features, but both involve extremely fragile connective tissues from head to toe.

Arthrochalasia EDS presents with:

• Severe congenital hip dislocations

• Extreme joint hypermobility, even more than in hEDS

• Muscle weakness and delayed motor development

• Skin elasticity and soft texture

• Fragile skin that bruises or tears easily

Infants with this type are often born with hip dislocations and may require multiple surgeries throughout life. The joint instability is profound and can lead to severe limitations in mobility and daily function.

Dermatosparaxis EDS, on the other hand, features:

• Extremely fragile, sagging skin (it may look prematurely aged)

• Severe bruising with little to no trauma

• Hernias and delayed wound healing

• Prominent eyes and facial features due to soft tissues

Because of their severity and visibility, these types are usually diagnosed early in life. Genetic testing helps confirm the diagnosis, as both types are linked to known gene mutations.

Systemic Symptoms Often Overlooked

While joint and skin issues are the most obvious signs of EDS, the syndrome doesn’t stop there. Many people suffer from systemic symptoms—those that affect entire bodily systems. Unfortunately, these are often misdiagnosed or dismissed, leaving patients to suffer silently.

Some of the most commonly overlooked systemic symptoms include:

1. Digestive issues:

   • Chronic constipation or diarrhea

   • Bloating and abdominal pain

   • Gastroparesis (slow stomach emptying)

   • Irritable Bowel Syndrome (IBS) misdiagnoses

   • Acid reflux and trouble swallowing

2. Cardiovascular complications:

   • Mitral valve prolapse

   • Postural Orthostatic Tachycardia Syndrome (POTS)

   • Low blood pressure or frequent dizziness upon standing

   • Varicose veins and poor circulation

3. Chronic fatigue and pain:

   • Overwhelming fatigue not relieved by rest

   • Generalized body pain and inflammation

   • Sleep disturbances or non-restorative sleep

The real kicker? Many doctors don’t connect these dots. Someone with chronic bloating and joint pain might see a gastroenterologist and a rheumatologist separately—without anyone realizing the two sets of symptoms are connected. That’s why understanding the full-body impact of EDS is so crucial.

For patients, tracking these symptoms and advocating for integrated care is often the key to relief. Holistic treatment plans that involve multiple specialists—rheumatologists, neurologists, cardiologists, and gastroenterologists—offer the best shot at managing the full spectrum of symptoms.

Neurological and Cognitive Symptoms

Let’s be real—when we think of EDS, our minds often jump to joints popping out or bruised skin. But there’s a deeper layer to this condition that people don’t talk about enough: the impact on the brain and nervous system. And it’s significant.

Many individuals with Ehlers-Danlos Syndrome, especially those with hypermobile EDS, report experiencing a wide range of neurological and cognitive symptoms, including:

• Brain fog – a constant feeling of confusion, forgetfulness, or inability to concentrate

• Migraines and chronic headaches – sometimes triggered by posture or neck instability

• Nerve pain – sharp, burning sensations that don’t have a clear cause

• Autonomic dysfunction – like fainting, dizziness, or rapid heartbeat

This cognitive cloudiness, often called "brain fog," can be incredibly frustrating. You might walk into a room and forget why you’re there, or struggle to focus during a conversation. And because it’s an “invisible” symptom, it’s often brushed off by others.

One of the root causes is cervical instability—when the neck isn’t properly supported due to loose ligaments. This can compress nerves or the spinal cord, leading to dizziness, numbness, tingling, and even blackouts. For some, even holding their head upright becomes exhausting over time.

Sleep disorders like insomnia, non-restorative sleep, and even sleep apnea are also common, compounding the fatigue and cognitive decline. Unfortunately, these symptoms are often mistaken for depression or stress, leading patients down the wrong treatment path.

Proper diagnosis and care can include MRIs, neurological exams, and autonomic testing. Tools like neck braces, pain management plans, and targeted therapies can help. But above all, awareness of these brain-related symptoms is crucial for a full understanding of EDS.

Mental Health and Psychological Impact

Living with a chronic condition like EDS isn’t just hard on the body—it’s mentally and emotionally draining. Imagine waking up every day in pain, not knowing if your joints will hold, or if anyone will even believe your symptoms. That’s the reality for many EDS patients, and it takes a toll.

Common psychological impacts include:

• Anxiety – especially about injuries, mobility, or medical visits

• Depression – from chronic pain, isolation, or lack of diagnosis

• PTSD – especially in those with long medical histories or trauma from misdiagnosis

• Low self-esteem – from visible scars, bruising, or physical limitations

Because EDS is often misunderstood, people with it are frequently labeled as “dramatic,” “lazy,” or “hypochondriacs.” These labels can be deeply damaging and lead to feelings of worthlessness or hopelessness.

The emotional burden is even heavier when symptoms begin young. Children and teens with EDS might miss school, sports, or social events—not because they don’t want to participate, but because their bodies won’t let them. Over time, this can lead to withdrawal, academic struggles, and strained relationships.

Therapy can help, especially when tailored to the unique challenges of chronic illness. Cognitive-behavioral therapy (CBT), support groups, and even online communities can provide validation and tools for coping. It’s also crucial for family members and caregivers to be educated, compassionate, and involved in the mental health journey.

The good news? Mental health support is becoming more common in chronic illness care plans. Addressing the emotional side of EDS is just as important as managing the physical symptoms—and it can dramatically improve quality of life.

Symptoms in Children vs Adults

Ehlers-Danlos Syndrome doesn’t play fair—it can show up at any age, and the symptoms don’t always look the same in kids as they do in adults. That’s part of what makes early diagnosis so challenging. Let’s break down the differences.

In Children:

• Delayed motor skills – crawling, sitting, or walking later than peers

• Frequent falls or clumsiness

• Unusual flexibility – kids might impress others with their “party tricks” like touching their thumb to their wrist

• Chronic leg pain or “growing pains”

• Easy bruising from playground accidents or mild bumps

Many of these signs are brushed off as normal childhood quirks, but they can be early red flags for EDS. Children may also develop scoliosis, flat feet, or fatigue that interferes with school or playtime. Unfortunately, pediatricians may miss the signs if they aren’t familiar with connective tissue disorders.

In Adults:

• Worsening joint instability and chronic pain

• Fatigue that becomes more debilitating over time

• Internal organ complications – like prolapses, hernias, or gastrointestinal issues

• Arthritis and joint degeneration

• Increased mental health struggles from long-term illness

As EDS patients age, the symptoms often shift from flexibility-based issues to pain and degeneration. Where a child might dislocate a shoulder and bounce back quickly, an adult could face weeks of recovery, inflammation, or even surgery.

The key takeaway? Symptoms evolve. That’s why early recognition, ongoing monitoring, and age-appropriate interventions are essential to managing EDS at every life stage.

Diagnosing EDS Through Symptoms

Diagnosis is often the biggest hurdle in the EDS journey. Because symptoms can mimic other conditions and vary so widely, patients may see a dozen doctors over several years before someone connects the dots.

So, how is EDS diagnosed?

Medical History Matters

A detailed patient history is the foundation. Doctors look for patterns like:

• Frequent joint dislocations

• Skin fragility and abnormal scarring

• Family history of similar symptoms

• Chronic pain without a clear cause

Patients should bring photos of past injuries, bruises, or scars, and prepare to describe childhood milestones and previous diagnoses.

Physical Examinations and Scoring Tools

One of the most widely used tools is the Beighton Score, which tests for hypermobility. It includes tasks like:

• Bending your thumb to your forearm

• Straightening your elbows beyond 180°

• Touching the floor with your palms while keeping legs straight

A high Beighton Score doesn’t confirm EDS alone, but it’s a strong indicator, especially when combined with other symptoms.

For vascular or rare forms, genetic testing can confirm mutations in specific collagen-related genes. Imaging studies like echocardiograms, MRIs, and X-rays can help rule out complications and identify structural issues.

Many patients benefit from seeing a geneticist or rheumatologist experienced in connective tissue disorders. But even then, the process can be slow and frustrating. That’s why self-education and advocacy are so important—knowing what symptoms to look for can help speed up the path to answers.

Symptom Management and Daily Life

Living with EDS means becoming your own body mechanic. It’s not about curing the condition—because there’s no cure yet—but about managing symptoms, avoiding injury, and maintaining quality of life.

Pain Management Techniques

• Over-the-counter or prescription pain relievers

• Physical therapy and stretching exercises

• Heat therapy or ice packs

• Massage and acupuncture for muscle tension

• Cognitive-behavioral therapy (CBT) for chronic pain

Lifestyle Modifications

• Joint protection – using braces, taping techniques, or supportive shoes

• Ergonomic adjustments – at work or home, to reduce strain

• Energy pacing – balancing activity with rest to avoid overexertion

• Nutrition – anti-inflammatory diets, hydration, and gut-friendly foods

Support Systems

• Online or in-person support groups

• Occupational therapy to aid in daily activities

• Home modifications like grab bars or adjustable beds

Everyday tasks like cooking, driving, or grocery shopping can feel overwhelming when your joints don’t cooperate. But with the right tools, planning, and mindset, people with EDS can live full, meaningful lives. The key is to listen to your body and adapt accordingly.

Conclusion

Ehlers-Danlos Syndrome isn’t just about being extra flexible or bruising easily—it’s a complex, life-altering condition that touches nearly every part of the body. From joint hypermobility and skin fragility to serious cardiovascular and neurological complications, the symptoms of EDS are as diverse as the people who live with it. And that’s precisely what makes it so difficult to diagnose and manage.

For many individuals, the road to diagnosis is long and filled with frustration. They may be labeled as anxious, accident-prone, or simply “lazy,” all while dealing with daily pain, fatigue, and an ever-growing list of mysterious symptoms. But with increased awareness, education, and advocacy, the narrative is starting to shift. More healthcare professionals are learning to recognize the signs, and more patients are finding their voices and demanding answers.

Living with EDS requires resilience, creativity, and a strong support system. It’s about learning your limits, adapting your routines, and celebrating the small victories—whether that’s a pain-free day, a successful doctor’s appointment, or just making it through the week. It’s a constant balancing act between pushing forward and knowing when to rest.

If you or someone you know is experiencing the symptoms outlined in this article, don’t ignore them. Start tracking them, talk to a knowledgeable healthcare provider, and consider seeing a specialist. Diagnosis might not change the condition itself, but it can open the door to better treatment, community support, and—most importantly—understanding.

Remember, you’re not alone. There are countless others navigating this journey, and resources are out there to help you manage the ups and downs of life with EDS. Knowledge is power, and by understanding the symptoms, we take the first step toward better lives for everyone affected by Ehlers-Danlos Syndrome.

Frequently Asked Questions (FAQs)

1. What is the most common symptom of EDS?

The most common symptom across all EDS types is joint hypermobility. This means joints move beyond the normal range, often causing dislocations, pain, and instability.

2. How do you know if you have EDS?

Signs include unusually flexible joints, stretchy or fragile skin, chronic pain, frequent bruising, and family history. If you suspect EDS, consult a specialist who can perform physical tests and possibly refer for genetic testing.

3. Can EDS symptoms get worse with age?

Yes, symptoms often progress over time. Joint pain and instability can worsen, and complications like arthritis or fatigue become more prominent. Early intervention and management can help slow down the progression.

4. Is there a cure for Ehlers-Danlos syndrome?

There is currently no cure for EDS. However, symptoms can be managed with a combination of medical care, physical therapy, lifestyle changes, and support from specialists.

5. What should I do if I suspect I have EDS?

Start by tracking your symptoms and discussing them with your primary care doctor. Ask for a referral to a geneticist or a rheumatologist familiar with connective tissue disorders for a thorough evaluation.