What Are the Symptoms of Ehlers-Danlos Syndrome?

Ehlers-Danlos symdrome (EDS) affects your collagen, a connective tissue found everywhere in your body. While most types of EDS include joint hypermobility and dislocations, loose or stretchy skin, and easy bruising, your exact symptoms will depend on which of the 13 EDS subtypes you have. Other common EDS symptoms include eye trouble, digestive health issues and bone growth differences.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

Learn More About Ehlers-Danlos Syndrome: Overview | Diagnosis | Treatment | Resources 

Medically reviewed by David S. Saperstein, M.D.

Hallmark Ehlers-Danlos Syndrome Symptoms | Symptoms by Ehlers-Danlos Syndrome Subtype | Related Conditions That May Occur in All Types of EDS | EDS Symptoms In Children

Understanding EDS: What Does Ehlers-Danlos Syndrome Feel Like?

Ehlers-Danlos syndrome (EDS) symptoms can range from your joints to your eyes, teeth, bone growth and everything in between. Across all 13 EDS subtypes, there are more than 100 symptoms. However, some symptoms are more common than others. In addition, each subtype of EDS has both major and minor symptoms, though hypermobile Ehlers-Danlos syndrome’s symptoms are grouped a little differently.

Major EDS symptoms are those that almost everyone, at least 80 percent of those with the subtype, will experience.³ You can also have minor symptoms of an EDS subtype, which are not as consistent for everyone. You and your brother may both have classic Ehlers-Danlos syndrome (cEDS), for example, but the two of you will not necessarily have the same minor symptoms. The minor symptoms serve as additional clues that can help your doctor make a diagnosis.

Hallmark Ehlers-Danlos Syndrome Symptoms

Despite the differences between each type’s symptoms, doctors typically see three major signs in almost everyone with EDS:

1. Above-average joint flexibility (hypermobility)
2. Stretchy skin that’s prone to scarring
3. Fragile skin that may heal slowly and bruise easily

Joint Flexibility, Pain and Dislocations

Flexible joints are a hallmark symptom of EDS. Called joint hypermobility, your joints can bend farther than most people. For example, you may be able to bend your pinky finger back more than 90 degrees or pull your thumb back so it touches your forearm. Depending on the subtype of EDS you have, you may have generalized joint hypermobility or only the smaller joints in your hands and feet (your distal joints) may be affected.

Hypermobile joints when you have EDS can be painful. Some people with EDS also experience regular joint dislocations or subluxations. Subluxations are partial dislocations, like when a joint pops out of place but the bones are still in contact or your spine is misaligned. Sometimes these full or partial dislocations can occur when you’re doing ordinary activities like trying to carry a basket full of groceries or going even going for a walk. Hypermobile or flexible joints when you have EDS aren’t a party trick — they are a daily complication of living.

 

What Are the Symptoms of Ehlers-Danlos Syndrome?

Ehlers-Danlos symdrome (EDS) affects your collagen, a connective tissue found everywhere in your body. While most types of EDS include joint hypermobility and dislocations, loose or stretchy skin, and easy bruising, your exact symptoms will depend on which of the 13 EDS subtypes you have. Other common EDS symptoms include eye trouble, digestive health issues and bone growth differences.

Learn More About Ehlers-Danlos Syndrome: Overview | Diagnosis | Treatment | Resources 

Medically reviewed by David S. Saperstein, M.D.

Hallmark Ehlers-Danlos Syndrome Symptoms | Symptoms by Ehlers-Danlos Syndrome Subtype | Related Conditions That May Occur in All Types of EDS | EDS Symptoms In Children

Understanding EDS: What Does Ehlers-Danlos Syndrome Feel Like?

Ehlers-Danlos syndrome (EDS) symptoms can range from your joints to your eyes, teeth, bone growth and everything in between. Across all 13 EDS subtypes, there are more than 100 symptoms. However, some symptoms are more common than others. In addition, each subtype of EDS has both major and minor symptoms, though hypermobile Ehlers-Danlos syndrome’s symptoms are grouped a little differently.

Major EDS symptoms are those that almost everyone, at least 80 percent of those with the subtype, will experience.³ You can also have minor symptoms of an EDS subtype, which are not as consistent for everyone. You and your brother may both have classic Ehlers-Danlos syndrome (cEDS), for example, but the two of you will not necessarily have the same minor symptoms. The minor symptoms serve as additional clues that can help your doctor make a diagnosis.

Hallmark Ehlers-Danlos Syndrome Symptoms

Despite the differences between each type’s symptoms, doctors typically see three major signs in almost everyone with EDS:

1. Above-average joint flexibility (hypermobility)
2. Stretchy skin that’s prone to scarring
3. Fragile skin that may heal slowly and bruise easily

Joint Flexibility, Pain and Dislocations

Flexible joints are a hallmark symptom of EDS. Called joint hypermobility, your joints can bend farther than most people. For example, you may be able to bend your pinky finger back more than 90 degrees or pull your thumb back so it touches your forearm. Depending on the subtype of EDS you have, you may have generalized joint hypermobility or only the smaller joints in your hands and feet (your distal joints) may be affected.

Hypermobile joints when you have EDS can be painful. Some people with EDS also experience regular joint dislocations or subluxations. Subluxations are partial dislocations, like when a joint pops out of place but the bones are still in contact or your spine is misaligned. Sometimes these full or partial dislocations can occur when you’re doing ordinary activities like trying to carry a basket full of groceries or going even going for a walk. Hypermobile or flexible joints when you have EDS aren’t a party trick — they are a daily complication of living.

Stretchy, Fragile Skin With “Atrophic” Scars

If you have EDS, your symptoms likely extend to your skin, a large organ full of collagen protein. The most common skin symptom is stretchy skin, which doctors may refer to by its technical name, skin hyperextensibility.

Your skin may also seem thin and almost translucent, allowing you to see your veins, especially in certain areas of the body. Your scars may look almost “dented” or “pitted,” which is called atrophic scarring. If you ever had severe acne that left scars, those scars are typically considered atrophic. Compared to your friends, you might also have more scars overall from just normal living. If you do get cut or hurt, it can take a longer time to heal. You might also get a lot of bruises. You’re probably one of those people who find an unexpected bruise on your arm when you wake up in the morning but have no idea how it got there. It’s because your skin is more fragile when you have EDS.

Symptoms by Ehlers-Danlos Syndrome Subtype

Each subtype of EDS is grouped by major and minor symptoms. While there is often overlap between the types of EDS, like joint or skin symptoms, each subtype has slightly different characteristics. The major symptoms are the ones almost everyone has if they have that subtype of EDS. Minor symptoms aren’t as common in everyone with EDS but are used by your doctors to help determine if you have EDS and if so, what type you may have.

You can skip to the symptoms for each subtype using these links:

• Hypermobile Ehlers-Danlos Syndrome (hEDS)
• Classic Ehlers-Danlos Syndrome (cEDS)
• Vascular Ehlers-Danlos Syndrome (vEDS)
• Classical-like EDS (clEDS)
• Cardiac-valvular EDS (aEDS)
• Arthrochalasia EDS (aEDS)
• Dermatosparaxis EDS (dEDS)
• Kyphoscoliotic EDS (kEDS)
• Brittle Cornea Syndrome (BCS)
• Spondylodysplastic EDS (spEDS)
• Musculocontractural EDS (mcEDS)
• Myopathic EDS (mEDS)
• Periodontal EDS (pEDS)

Hypermobile Ehlers-Danlos Syndrome (hEDS)

Many people who have EDS, an estimated 80 to 90 percent of EDS patients, have hypermobile EDS (hEDS). As its name suggests, joint hypermobility or flexibility is a core symptom. Generalized joint flexibility, like being able to bend your joints further than most people, is the hallmark of hEDS.

How much flexibility you experience may be determined by your age. Some experts have observed that over the course of a person’s life, they go through a “hypermobility” stage pre-puberty where they’re more flexible, a “pain” stage as an adult up until about age 50 where they’re less flexible but experience more joint-related pain in conjunction with hypermobility, and a “stiffness” phase after age of 50 when most people are no longer as naturally flexible.²

Sometimes, along with joint flexibility, you may feel joint pain and have frequent joint dislocations that happen with little effort, like when you’re trying to pick up an object that isn’t that heavy. This can include subluxations or partial joint dislocations. You may also get sprains easily or have joint instability, meaning you’re prone to dislocations.

In addition to generalized joint flexibility, there are 12 additional symptoms associated with hEDS.⁴ These symptoms include:

• Soft or velvety skin
• Slightly stretchier skin that most other people
• Stretch marks on your body even though you haven’t gained or lost weight
• Bumps on your heels (caused by fat that has herniated or pushed through your skin where it shouldn’t). These are usually painless.
• More than one hernia around your groin or abdomen, where organ tissue or fat pushes through internal areas of the body where it doesn’t belong. Sometimes this is painful.
• “Dented” or “pitted” scarring in at least two different areas of your body
• A pelvic floor, rectal or uterus prolapse, which means a part of your organ has slipped out of place inside and may be seen protruding outside of your body
• Your teeth may be crowded in your mouth
• Long fingers in comparison to your palm, sometimes called “spider fingers”
• Your wingspan — the distance from fingertip to fingertip when you hold your arms straight out to the sides — is greater than 1.05 times your height
• Mitral valve prolapse, where extra tissue bulges into your heart that usually causes non-life threatening symptoms like an irregular heartbeat, chest pain, shortness of breath or dizziness; sometimes called a “floppy heart valve”³⁶
• An enlarged or dilated aorta (the main artery in your body) that doesn’t show any symptoms unless it ruptures

The other major symptom of hEDS is what doctors call musculoskeletal pain or pain in the “structural” parts of your body, including bones, joints, muscles, tendons, ligaments and nerves. With hEDS, you’ll have pain in at least two different limbs or even chronic, widespread pain every day for at least three months.⁴

Related:

• 20 Signs You Might Have Ehlers-Danlos Syndrome
• 24 Surprising Symptoms of Ehlers-Danlos Syndrome
• 10 Little-Known Symptoms of Ehlers-Danlos Syndrome — in Photos

Classic Ehlers-Danlos Syndrome (cEDS)

Though not as common as hEDS, classic Ehlers-Danlos syndrome (cEDS) is considered the “classical” presentation of EDS. The most common symptoms involve your joints and skin. If you suspect you have cEDS, someone else in your family likely has the same symptoms.⁴ 

Major Symptoms

• Stretchy skin
• “Dented” or “pitted” scarring (atrophic scars)
• Generalized joint hypermobility or flexibility

Minor symptoms you could have that point to cEDS include bruising easily; having skin that feels soft and almost doughy; fragile skin; calcified areas that grow over scars; small, hard cyst-like bumps that most often form over the bony areas on your arms and legs; hernias where organ tissue bulges into an area of your body it shouldn’t; a skin fold of your upper eyelid that covers the corner of your eye; as well as sprains, full and partial dislocations and pain in joints.⁴

Vascular Ehlers-Danlos Syndrome (vEDS)

Vascular Ehlers-Danlos syndrome (vEDS) is one of the more serious forms of the condition because it primarily affects the tissue around your blood vessels and digestive track, making them more fragile than usual. Doctors have found that about 12 percent of people with vEDS experience a collapsed lung. Though it’s listed as a minor criterion, it’s often the first sign of the condition.²

Major Symptoms⁴

• Ruptured artery that happens before the age of 40
• Punctured colon without a bowel disorder that would normally cause this
• Unusual connection between the arteries in your neck and the blood vessels behind your eye that can cause vision problems
• Ruptured uterus if you were born female
• Family member who has also been diagnosed with vEDS

Minor symptoms may include bruising that doesn’t always seem to have a cause, bruising in unusual areas like your cheeks or back, thin skin that looks almost translucent, a collapsed lung, skin that looks older than your age, clubfoot, hip dislocations, hypermobility or flexibility in your smaller joints, tendon or muscle ruptures, thinning or bulging of the clear coating of your eye called the cornea, receding gums and developing varicose veins at a young age (under age 30).⁴

You may also see another minor category symptom that doctors refer to as “characteristic” facial features.⁴ This is really a group of additional symptoms that can include big eyes and eyelids that appear puffy, upper eyelid skin folds that cover the corner of your eye, eyelid openings that slant downward, a bluish color in the whites of your eyes and larger soft spots as a baby that take longer than usual to close.

Patients with hEDS or cEDS may exhibit some of these minor symptoms; it does not necessarily mean they have vEDS. The presence of major symptoms, a significant number of minor symptoms or the presence of a concerning family history should raise suspicion for vEDS.

Classical-Like EDS (clEDS)

Classical-like Ehlers-Danlos syndrome (clEDS) is similar in nature to the classical subtype of EDS, but is it tied to a different collagen gene and has slightly different symptoms.⁴ For example, you might have dented scarring with classical EDS, but not classical-like EDS.

Major Symptoms⁴

• Stretchy skin that feels almost velvety without “dented” or “pitted” scarring
• Generalized joint hypermobility or flexibility with or without dislocations that happen most often in your shoulders and ankles
• Easy bruising of your skin

You may have one or more of the following minor symptoms associated with clEDS: foot differences like a broad foot or short toes; bumps on your heels (caused by fat that has herniated or pushed through some layers of tissue under your skin); swelling in your legs from excess fluid that’s not caused by a heart condition; muscle weakness and atrophy or decay especially in your hands and feet; a nerve condition called axonal polyneuropathy; hand differences like mallet fingers, shortened fingers or hands that look like they have aged even though you’re young; and vaginal, uterus or rectal prolapse where part of your organ may protrude outside of your body.⁴

Cardiac-valvular EDS (cvEDS)

Though it’s rare, cardiac-valvular Ehlers-Danlos syndrome (cvEDS) is also a very serious medical condition. Characterized by joint and skin symptoms like other forms of EDS, when you have cvEDS, you’ll likely have progressive heart problems, especially issues with your heart’s valves.⁴

Major Symptoms⁴

• Serious and progressive heart problems, particularly issues with the heart’s valves
• Skin symptoms, including stretchy and thin skin, dented scarring and easy bruising
• Joint flexibility either throughout your body or just in smaller joints like your hands or feet

You can also have minor cvEDS symptoms like a groin hernia where your tissue will bulge internally in a way it’s not supposed to and you experience pain in your groin area; a growth difference where your breastbone “sinks” into your chest, that in severe cases can look like your chest has a scoop in it; joint dislocations; and foot differences like flat feet or bunions.⁴

Arthrochalasia EDS (aEDS)

If you have arthrochalasia Ehlers-Danlos syndrome (aEDS), joint dislocations will probably be one of your biggest symptoms and they can cause a significant amount of pain.⁴ As you grow, your spine may be curved differently and your skin may also show signs of aEDS.

Major Symptoms⁴

• Congenital hip dislocations that are usually present when you are born where your hip joints are considered unstable
• Significant generalized joint flexibility with frequent dislocations or partial dislocations
• Stretchy skin

In addition, minor symptoms of aEDS can include low muscle tone, a growth difference called kyphoscoliosis where your spine develops an abnormal curve in two directions — sideways and vertically — that can sometimes decrease the amount of air your lungs can hold. You may also experience minor bone loss and fragile skin and tissue that bruises easily and forms dented scars.⁴

Dermatosparaxis EDS (dEDS)

Dermatosparaxis Ehlers-Danlos syndrome (dEDS) first and foremost affects your skin as well as your limbs and height, both of which grow shorter than average when you have dEDS.⁴ Doctors have identified a total of nine major symptoms that you’ll probably have if you live with dEDS.

Major Symptoms⁴

• Very fragile skin with skin tears as a result
• Facial features common among people who live with dEDS that appear within the first months or years of life such as big eyes, puffy-appearing eyelids, skin folds that cover the corner of your eye, downward-slanting eyelid openings, a bluish color in the whites of your eyes and larger soft spots when babies are born that take longer than usual to close
• Lots of extra skin and skin folds especially around your wrists and ankles
• Extra wrinkling on the palms of your hands
• Serious bruises that may even bleed under the skin or cause ruptured blood vessels
• Umbilical hernias in the abdomen caused by organ tissue pushing into areas of the body it shouldn’t
• Slower growth after birth
• Shorter than average limbs, hands and feet
• Between 22 weeks of pregnancy and a week after a baby’s birth, the baby experiences complications because their tissue is so fragile

Minor symptoms of dEDS can include soft skin texture that feels almost doughy, stretchy skin, dented or pitted scars, generalized joint flexibility, complications due to fragile organ tissue such as bladder or diaphragm rupture or rectal prolapse when part of your colon protrudes outside your body because it becomes disconnected from its normal place in your body, delayed motor development, bone loss, male-pattern facial hair growth in people born female, teeth differences, vision difficulties like nearsightedness or astigmatism, or crossed or “turned” eyes.⁴

Kyphoscoliotic EDS (kEDS)

Kyphoscoliotic Ehlers-Danlos syndrome (kEDS) references a condition called kyphoscoliosis, one of this subtype’s main features.⁴ With kyphoscoliosis, your spine curves side to side and also curves along the “hunch” of your back. As your spine grows like this, it might prevent your lungs from expanding completely, reduce your lung capacity and you can experience breathing problems as a result. The kyphoscoliotic subtype of EDS has been linked with two different genes, and you may have different minor symptoms depending on which genes is causing your EDS.

Major Symptoms⁴

• Poor muscle tone from birth
• Early onset and progressive (worsening) kyphoscoliosis
• Generalized joint flexibility with frequent full or partial dislocations

You can have minor symptoms such as stretchy skin, skin that bruises easily, ruptures of your medium-sized arteries, bone loss or weak and brittle bones, a bluish color in the whites of your eyes, groin or abdominal hernias that can cause sharp pains, a growth difference where your breastbone may “sink” into your chest, long limbs, an arm span that’s greater than your height, clubfeet, and vision problems such as nearsightedness or astigmatism.⁴

Depending on what gene cases your kEDS, you may also have a high risk for eye rupture, smaller than usual eyes, and facial features like your ears are lower on your head than average, skin folds that cover the corner of your eyes, or a unibrow.⁴ Another gene leads to hearing impairments, corns, calluses or thickened skin on your body, and bladder diverticula where small pouches develop on your bladder that may not have any noticeable symptoms.⁴

Brittle Cornea Syndrome (BCS)

Brittle cornea syndrome (BCS) is all about your eyes, especially the cornea, which is the clear layer that forms the front of your eye. You can also experience many of the symptoms common across all the EDS subtypes like flexible joints and soft skin.⁴

Major Symptoms⁴

• Thin cornea (the clear part of your eye) that can rupture
• Your cornea gets thinner and as a result starts to bulge outward, starting from a young age and getting worse as you get older
• Similar to the bulging shape of your cornea, cornea thinning at an early age can cause your eye to take on more of a globe-like shape that progresses as you get older
• Blueish color in the white parts of your eyes

The minor eye-related symptoms of BCS might include scarring on your cornea because of a previous eye rupture, decreased depth of the fibrous tissue that makes up your cornea, significant nearsightedness and the detachment of your eye’s retina. With BCS, other minor symptoms that you may have are deafness, inner ear trouble, and hip dysplasia, which means your hip socket doesn’t completely cover the ball of your hip joint.⁴

You might also experience mildly decreased muscle tone as a baby; a spine curve because it grows sideways (scoliosis); fingers that are longer than average; extra flexible hand, feet and wrist joints; flat feet and bunions, some shortening or hardening in your muscles and other connective tissues (called contractures) in your finger that can cause rigid joints; and skin that feels velvety and looks translucent, almost see-through.⁴

Spondylodysplastic EDS (spEDS)

Spondylodysplastic Ehlers-Danlos syndrome (spEDS) mostly will affect your height, your arms and legs and your muscles.⁴ Doctors have found three different genes that can cause the condition, and each gene may mean you have different minor symptoms.

Major Symptoms⁴

• Short stature or height
• Low muscle tone that can start at birth or mildly low muscle tone that develops later in life
• Bowed limbs

Regardless of which gene is related to your spEDS, the minor symptoms you can have are stretchy skin that feels soft, thin skin that seems see-through, flat feet, delayed motor development, bone loss, and delayed cognitive development. Additional symptoms your doctor may ask about are related to the three different genes that are linked to spEDS⁴:

Symptoms Related to B4GALT7 Gene

• Unusual tissue connection between the two bones in your forearm
• A tightening or shortening of the muscles in your elbow or limited elbow movement
• Generalized joint hypermobility or flexibility
• One major crease running horizontally across your palm instead of several noticeable creases
• Facial features that might include eyes that appear large, a larger-than-average forehead, eye sockets that slant downward, bluish color in the whites of your eyes, longer-than-usual upper lip, low-set ears, a cleft palate or a small jaw
• Signs doctors consider “characteristic” on X-rays or radiology tests like a short upper hip bone (short ilium), a hip socket that doesn’t fully cover the ball joint of your hip, misalignment of your elbows and weak or brittle bones
• Very farsighted vision
• A cloudy cornea in your eyes, a part of your eye that is usually clear

Symptoms Related to B3GALT6 Gene 

• Spine growth difference where your spine curves sideways and vertically (kyphoscoliosis) that can restrict how much air your lungs can hold
• Joint flexibility and joint dislocations
• Hardened or shortened muscles, tendons and connective tissue called contractures in your joints, especially your hands
• Finger differences that might include slender, tapered and long fingers
• Clubfeet
• Facial features like large-appearing eyes, a prominent forehead, eye sockets that seem to slope downward, a blue color in the whites of your eyes, an upper lip that’s longer than usual, low-set ears, a cleft palate or a small jaw
• Discoloration on your teeth
• Bone differences, especially in your hips as well as your elbows
• Weak and brittle bones that break easily
• An aneurysm, or bulge, in your aorta, the largest artery in your body, that may or may not cause any symptoms
• Lungs that haven’t developed completely or restrictive lung disease

Symptoms Related to SLC39A13 Gene

• Eyes that may appear to “bulge” with eye whites that have a bluish hue
• Lots of small wrinkles on your palms
• Decreased muscle mass that can cause weakness or stiffness in the muscle at the base of your thumb and tapering fingers
• Joint flexibility in your distal joints like your hands, wrists and feet
• Bone symptoms such as bone loss in your spine, a short upper hip bone and a wider than usual femur neck, the bone just below the ball of your hip socket

Musculocontractural EDS (mcEDS)

When you have musculocontractural Ehlers-Danlos syndrome (mcEDS), unlike the extra flexibility you’d have with many other subtypes of EDS, you have more contractures.⁴ A contracture is a hardening or shortening of your muscles, tendons, ligaments or other connective tissues that can cause stiffness, rigidity and physical differences in your joints.

Major Symptoms⁴

• Many contractures (hardening or shortening of muscles, tendons or other connective tissue), especially in your thumb, so you don’t have as much range of motion, or as evidenced by having clubfoot
• Facial features that you either have at birth or develop very early in your life such as larger than average soft spots as a baby, shorter-than-average distance between your eyes, blue coloring in the white of your eyes, a short nose, high palate and small mouth
• Stretchy skin that bruises easily and skin that’s fragile and prone to “dented” atrophic scarring as well as wrinkly palms

Minor symptoms of mcEDS you may experience include regular joint dislocations, feet differences like flat feet or clubfoot, spinal growth differences that cause the spine to curve (scoliosis or kyphoscoliosis), fingers that may be more tapered or slender than usual, frequent constipation, injuries that cause hematomas or bleeding under the skin, and a condition called diverticulosis where small pouches develop on your colon that can sometimes cause bleeding.⁴

More seriously, mcEDS can cause a collapsed lung, kidney stones or kidney swelling because of urine backed up in your system. You may have had an undescended testicle if you were born male. This EDS subtype may lead to vision-related symptoms like eyes that are turned in or crossed, vision problems like nearsightedness or astigmatism and an eye condition called glaucoma that damages your optic nerve and can cause blindness.⁴

Myopathic EDS (mEDS)

Myopathic Ehlers-Danlos syndrome (mEDS) has a relatively short list of major and minor symptoms.⁴ If you find that some of your joints, like your elbows or hips, are more rigid and stiff than usual while your smaller wrist and finger joints are more flexible than usual, mEDS may be the cause. So far researchers have only identified one of the major symptoms — muscle weakness that gets better the older you get — in only five families with mEDS. Like several EDS subtypes, mEDS is rare.

Major Symptoms⁴

• Low muscle tone from birth or muscle weakness that improves as you get older
• Rigidity in your knee, hip and elbow muscles caused by joint contractures
• Hypermobility or flexibility in your distal joints (hands, wrists, feet, etc.)

The minor symptoms connected to mEDS include pitted atrophic scarring, delayed motor development and a muscle disease called myopathy that leads to muscle stiffness, cramps, spasms and weakness.⁴

Periodontal EDS (pEDS)

Because collagen is everywhere in your body, EDS can even impact your teeth. Periodontal Ehlers-Danlos syndrome (pEDS) and its major symptoms are related to the health of your teeth and gums.⁴ This is another form of EDS where you’re more likely to have it if someone else in your family has similar symptoms.

Major Symptoms⁴

• Severe gum disease called periodontitis, which, if left untreated, can even damage your jaw bone
• Detached gums
• A crusty substance called plaque that develops on the lower inner parts of your legs in and around your shins
• Parents, siblings or children who also have enough symptoms to also be diagnosed with pEDS

Minor symptoms of pEDS could include easy bruising; joint hypermobility, especially in your smaller joints like the hands and feet; stretchy, fragile skin with scarring that can be wide or pitted; high risk for infections; hernias where tissue bulges out internally where it shouldn’t and causes sharp pain; facial features such as a narrow skull, small jaw and flatter than average cheeks; premature aging in your skin, especially on your hands and feet; and prominent veins.⁴

Related:

• 25 Pictures That Show What Ehlers-Danlos Syndrome Really Looks Like
• 15 ‘Embarrassing’ Symptoms of Ehlers-Danlos Syndrome We Don’t Talk About
• 29 People With Ehlers-Danlos Syndrome Explain What It Feels Like

Related Conditions That May Occur in All Types of EDS

While there are already plenty of symptoms to describe for each subtype of EDS, if you live with the condition, you might have noticed you also have other conditions at the same time. This is a common experience, especially a series of comorbid illnesses that fall under the umbrella of dysautonomia. Dysautonomia covers a wide range of issues related to involuntary body functions controlled by your autonomic nervous system. Your autonomic nervous system controls everything from your heart rate to your sexual function and much more.

In general, you may experience symptoms such as:

• Fatigue
• Dizziness
• Fainting
• Memory issues
• Trouble concentrating
• Sweating less than normal
• Bladder trouble
• Anxiety

For some people, dysautonomic symptoms can be even worse than the joint dislocation or joint pain common across many of the EDS subtypes. You may experience frequent migraines. Postural orthostatic tachycardia syndrome (POTS) is particularly common when you have EDS.

POTS can lead to symptoms like^1:

• Frequent fainting
• A fast heartbeat
• Blurred vision when standing up
• Head rushes
• Dizziness

If you have EDS, you’re particularly prone to digestive health problems, which is related to the autonomic nervous system as well. An estimated 75 percent of people who have the hypermobile subtype of EDS have a digestive system issue at some point in their life. These could include irritable bowel syndrome (IBS) or gastroparesis, a condition where your gastric system doesn’t empty as soon as it should and causes you to experience nausea, vomiting and stomach pain.⁶

EDS Symptoms in Children

EDS is a genetic condition, so it’s something you’re born with. Depending on the subtype, you might know early on you have EDS, like when you’re born with physical differences as a result of the condition. Other times, your symptoms might be more subtle and it takes much longer to realize you have a condition. Each subtype’s symptoms will differ in children. For example, children who have the vascular subtype of EDS might be diagnosed after they have lots of unexplained bruises that might have been reported as child abuse by a teacher or family friend when in reality the bruising is a fragile skin symptom caused by vEDS.

Joint hypermobility — the overly flexible joints — that nearly all of the EDS subtypes share may present a little differently in children. Children with undiagnosed EDS may like showing off their flexible joints and contortionism to friends but they may not yet experience much joint pain prior to puberty. These initial signs might be missed as a symptom.

Even children without EDS may have hyperflexible joints but they just might outgrow them after they turn 5 years old, whereas a child with EDS will not. When kids do report pain, it’s usually in their lower limbs and doctors may write off their concerns as “growing pains.”⁵ Though younger people with EDS won’t always have joint pain, fine motor skills like writing by hand or other repetitive motions might be painful for children.

Some symptoms of EDS to watch out for in children involve their development. Some children with hEDS may be unusually clumsy, which a doctor might initially diagnose as dyspraxia, a developmental coordination disorder, instead of EDS. Kids with EDS may also get sprains or dislocations more often than their peers, sometimes to a point where the frequency is suspicious. In general, it’s harder for children with EDS to get an accurate diagnosis because it’s easy to write off their symptoms as “just” normal kid bumps and bruises or other conditions.

Related:

• 23 Signs You Grew Up With Ehlers-Danlos Syndrome
• 21 Symptoms Kids With Ehlers-Danlos Syndrome Had That Weren’t ‘Growing Pains’

Learn More About Ehlers-Danlos Syndrome: Overview | Diagnosis | Treatment | Resources 

Sources

1. Blitshteyn, S. (2018). Ehlers-Danlos Syndrome [Telephone interview].
2. Bowen, J. M., Sobey, G. J., Burrows, N. P., Colombi, M., Lavallee, M. E., Malfait, F., & Francomano, C. A. (2017). Ehlers–Danlos Syndrome, Classical Type. American Journal of Medical Genetics Part C (Seminars in Medical Genetics), 175C, 27-39. Retrieved from https://www.ehlers-danlos.com/pdf/2017-FINAL-AJMG-PDFs/Bowen_et_al-2017-American_Journal_of_Medical_Genetics_Part_C-_Seminars_in_Medical_Genetics.pdf
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