Ehlers-Danlos Syndromes in Children: Signs, Diagnosis, and Support

Ehlers-Danlos syndrome in children most often shows up as joints that bend too far and get injured easily, pain that flares with activity, soft or stretchy skin that bruises, clumsiness and tiredness.⁠^7,8,9 Flexibility alone is common in children and needs no treatment; what raises the question is flexibility with pain, dislocations, skin changes or a family history.⁠^4,10 Care centers on physical therapy that builds strength and control, not more stretching, and a child with vascular EDS who has sudden severe pain needs emergency care.⁠^11,12,13

What are the Ehlers-Danlos syndromes?

The Ehlers-Danlos syndromes (EDS) are a group of 13 heritable connective tissue disorders, caused by genetic changes that affect connective tissue.⁠¹ Each type has its own features and criteria, but three run through all of them: joint hypermobility, skin that stretches beyond the normal range, and tissue fragility.⁠^1,2

Collagen, the main component of connective tissue, gives strength and structure to the skin, bones, blood vessels and internal organs. In EDS, gene variants disrupt how collagen is made or processed, which weakens connective tissue throughout the body.⁠^16,17

Since 2017 the types have descriptive names, and Roman-numeral labels such as EDS type III, the old name for hEDS, are no longer used.⁠^1,7

How is Ehlers-Danlos syndrome inherited?

Every type is inherited in either an autosomal dominant or an autosomal recessive pattern, and autosomal means boys and girls have an equal chance of inheriting it.⁠³

• Dominant

  One altered copy is enough, so each child of an affected parent has a 50% chance. Classical, vascular, arthrochalasia and periodontal EDS, and probably hEDS.⁠^3,17

• Recessive

  A child must inherit the variant from both parents, who are usually healthy carriers. Most of the rare types.⁠^3,17

• Either, or new

  Myopathic EDS can follow either pattern, and a child can be the first in the family to have EDS through a new (de novo) variant.⁠³

A child who inherits EDS has the same type as the parent, but not necessarily the same symptoms, even within one family.⁠³ Genetic counseling is recommended for prospective parents with a family history of EDS.⁠¹⁶

What are the 13 types of Ehlers-Danlos syndrome?

The 2017 classification recognizes 13 types, each named for its main features.⁠^1,2 Hypermobile EDS is by far the most common; classical EDS affects about 1 in 20,000 to 40,000 people, vascular EDS about 1 in 100,000 to 200,000, and the other ten are ultra-rare, each fewer than 1 in a million.⁠¹

The classification will keep evolving as research finds new gene variants.⁠¹ Hypermobility also occurs as part of other syndromes, such as Marfan syndrome and Down syndrome, which have to be considered before hEDS or HSD is diagnosed.⁠⁴

Understanding hypermobility in children: what is normal?

Most babies and children are naturally very flexible, and many become less flexible as they grow; hypermobility continues into adulthood for up to about 20% of people.⁠⁴ Being bendy or double-jointed is not usually a problem, and hypermobility that causes no symptoms, called asymptomatic joint hypermobility, does not need treatment.⁠⁴

Because children have so much joint range, it is hard to tell a normal trait from an underlying disorder, and hypermobility decreases through childhood, probably later in girls than in boys.⁠¹⁴ Applying the adult cut-off to children may over-diagnose them.⁠²

What is the Beighton score?

The Beighton score is the standard screen for generalized hypermobility: nine points, one for each movement.⁠^2,18

A score of 6 or more counts as generalized hypermobility before puberty, one point above the adult threshold of 5 because children are typically more hypermobile; it is assessed from age 5.⁠^5,10 The score leaves out joints such as the jaw, shoulders, wrists, hips and ankles, so each painful joint deserves its own examination.⁠^4,14

What happened to joint hypermobility syndrome?

Joint hypermobility syndrome and benign joint hypermobility syndrome are outdated diagnoses: since 2017, most people who had them are classified as having either hEDS or a hypermobility spectrum disorder (HSD).⁠^1,4

When does hypermobility become a problem?

When the joints are also unstable, so the bones are not held securely in place. A diagnosis of HSD needs evidence that the hypermobility is causing problems, not just present.⁠⁴

hEDS vs hypermobility spectrum disorder (HSD) in children

Both are diagnosed from the history and an examination, with no lab test. hEDS needs all three of the 2017 criteria; HSD is the diagnosis for symptomatic hypermobility that hEDS or another condition does not explain.⁠^2,4 Before biological maturity, children are placed in pediatric categories instead, and hEDS is reserved for biologically mature adolescents.⁠^5,14

HSD is not a milder form of hEDS. In a study of 97 adults, the two had a similar spectrum of other health problems and similar severity, apart from worse pain, movement problems and bleeding with hEDS, and more than half in both groups improved with the same physical therapy.⁠¹⁹ An Italian center that reapplied the 2017 criteria to 327 patients concluded they are too stringent and should take in many people now labeled HSD.⁠²⁰

The four types of hypermobility spectrum disorder

• Generalized HSD

  Hypermobility throughout the body; most people with generalized hypermobility and joint problems who do not meet the hEDS criteria fall here.⁠^4,21

• Peripheral HSD

  Hypermobility limited to the hands and feet, a pattern common in infants, toddlers and children.⁠^4,21

• Localized HSD

  Hypermobility in a single joint or a group of joints in one area.⁠⁴

• Historical HSD

  A history of generalized hypermobility without current evidence of it on examination.⁠⁴

Signs and symptoms of EDS in children

Signs vary by type and from child to child, but hypermobility, pain and fatigue are common across all types.⁠¹ In hypermobile children, pain made worse by activity is a distinguishing feature: in one clinic series, 81% said exercise worsened their pain.⁠⁸

Knee pain, kneecap dislocations and unstable joints

The knee and the shoulder are the most common places for pain in hypermobile children, and the knee, ankle and shoulder are the joints that most often give way.⁠⁸ At the Sydney clinic, 63% of hypermobile children had knee pain and 35% an unstable knee, mostly the kneecap, and teenagers in general have far more first and repeat kneecap dislocations than adults.⁠¹⁴

Why do my child's joints click, crack or pop?

Joints popping is listed among the symptoms of EDS, with increased joint mobility and double-jointedness.⁠¹⁶ What matters more is what a child does with it: party tricks such as popping a shoulder in and out of joint overstretch the joints and make them more likely to slip out of place.⁠²⁶ If a joint keeps slipping or giving way, a physical or occupational therapist can look for the cause and advise on preventing it.⁠¹¹

Clumsiness, coordination and gross motor skills

Reduced proprioception, the sense of where the body is and how it moves, can make a child seem clumsy and more likely to be injured.⁠⁹ Among hypermobile children presenting to health services, 36% reported poor coordination and 48% clumsiness, and gross motor skills were reduced in 22% in another study.⁠⁸ The overlap with developmental coordination disorder is large: one study found joint hypermobility syndrome in 37% of children with the disorder, against 7.4% of other children.⁠¹⁴ Our guides to dyspraxia and vestibular and proprioceptive processing go further.

Mood, anxiety and behavior in children with EDS

Anxiety is the mental health problem most strongly linked with hypermobility; the evidence for depression is more limited, and research on mood disorders is much smaller.⁠²⁷ A Welsh registry found about four times the odds of a recorded mental disorder in children with EDS or HSD, and children with generalized hypermobility had more anxiety disorders than controls.⁠¹⁴ Behavior problems, hyperactivity and autistic traits are also seen more often.⁠²⁵ One caution: chronic pain, especially tummy pain, is often misread as a behavioral problem in children.⁠²² See our guide to anxiety in children.

Signs of Ehlers-Danlos syndrome in babies and toddlers

In babies and toddlers the main sign is usually weak muscle tone (hypotonia): infants and children with hypermobility often have low tone, which can delay sitting, standing and walking.⁠¹⁷ Parents commonly report late walking and clumsiness, and gut symptoms and dysautonomia can begin very early in life.⁠⁸

Hypermobility cannot be meaningfully scored before age 5, because infants and toddlers lack the bone maturity, so the pediatric categories are not applied to them.⁠^5,14 Hypermobility of the hands and feet alone is common at this age.⁠²¹ A few of the rare types, though, show clear signs at birth or in infancy.⁠²

Facial features and skin signs of EDS in children

A characteristic facial appearance is part of the criteria only for some types. In vascular EDS it includes prominent eyes, a narrow nose, thin lips and attached or absent earlobes, often recognized only in retrospect; several rare types have distinctive features from birth or infancy.⁠^2,12,13

Translucent skin may be harder to see on brown or black skin, and thin, translucent skin is common in the young generally, so on its own it does not mean EDS.⁠²³

Protecting fragile skin in young children

How is Ehlers-Danlos syndrome diagnosed in children?

EDS is diagnosed from the child's history, an examination and the family history, with genetic testing for the types that have a known gene: a child who meets the criteria for a type other than hEDS should have a genetic test to confirm it, while hEDS is diagnosed on the criteria alone.⁠^1,3

1. The history. Joint problems, pain, injuries and healing, how they have changed over time, and any relatives with EDS or a similar condition.⁠^10,29
2. The joints. The Beighton score, then each painful or unstable joint, with neurological and musculoskeletal checks.⁠¹⁴
3. The skin. Stretch measured on the forearm, back of the hand or neck, with texture, thickness and scars.⁠²³
4. The heart, if indicated. An echocardiogram can look for mitral valve prolapse or a widened aortic root, both in the hEDS criteria.⁠^10,16
5. Other conditions ruled out. Including neuromuscular disorders, other connective tissue disorders and skeletal dysplasias.⁠¹⁰
6. Genetic testing, if a genetic type is suspected. Usually a gene panel, ordered and interpreted by a medical professional.⁠³

Genetic testing is not routine for every hypermobile child, and the pediatric working group puts the current yield of targeted testing at 11.5%.⁠¹⁴ Consumer DNA kits cannot diagnose any type of EDS or HSD.⁠³

What kind of doctor diagnoses EDS?

Start with your child's pediatrician or family doctor. The hEDS checklist is designed for doctors in any discipline, and experts write that most common concerns are within the ability of most generalists, with specialist support when needed.⁠^10,30

What are the 2017 hEDS diagnostic criteria?

A clinical diagnosis of hEDS needs all three criteria at the same time.⁠¹⁰

• Criterion 1: generalized hypermobility

  A Beighton score of at least 6 before puberty, 5 from puberty to age 50, and 4 over 50; one point below can count with two or more yes answers on a five-question history.⁠¹⁰

• Criterion 2: two of A, B and C

  A: at least 5 of 12 body features, such as soft skin, unexplained stretch marks or hernias. B: a parent, brother, sister or child who meets the criteria. C: daily pain in two or more limbs, or widespread pain, for 3 months, or recurrent dislocations.⁠¹⁰

• Criterion 3: other causes excluded

  No unusual skin fragility, and other connective tissue disorders and alternative diagnoses ruled out.⁠¹⁰

The 2023 pediatric hypermobility framework

Because the adult criteria are hard to apply to children, the International Consortium's Pediatric Working Group published a framework in May 2023 for ages 5 to biological maturity (the end of puberty and bone growth, or age 18), sorting children with generalized hypermobility into eight categories.⁠^5,14

Joint or soft-tissue problems means at least two of: pain with activity, recurrent dislocations or subluxations, and soft tissue injuries; skin involvement means at least three of six skin findings; core comorbidities are chronic pain, chronic fatigue, functional gut or bladder disorders, primary dysautonomia and anxiety that distress or disable the child.⁠⁵

Why EDS is hard to diagnose in children

Children are naturally hypermobile, features such as stretch marks and scars appear only with growth or injury, and many of the associated problems are common in children anyway.⁠¹⁴ EDS is poorly recognized in children, whose early signs can look like ordinary childhood illness, and delays of more than a decade are too common.⁠^30,33 Vascular EDS is rarely considered in childhood without a family history, even with unexplained bruising.⁠¹³

New hEDS criteria: what changes in 2026?

A revised classification is coming but has not been published. Under the Ehlers-Danlos Society's Road to 2026, updated criteria for all types of EDS and HSD are to be published on December 2, 2026, in two special editions of the American Journal of Medical Genetics Part C, with a diagnostic pathway and hEDS and HSD guidance in March 2027; the Society notes these timelines may change.⁠⁶

People already diagnosed under one of the pre-2026 frameworks do not need to be reevaluated.⁠¹⁵ Until the update, the 2017 criteria apply to adults and the 2023 pediatric framework to children.⁠⁹

What the HEDGE genetic study found

HEDGE, the Hypermobile Ehlers-Danlos Genetic Evaluation, sequenced the DNA of 1,000 people with hEDS and 45 with HSD from 86 countries. No single gene explains hEDS or HSD so far, and fewer than 1% of participants turned out to have another connective tissue disorder, which the Society reads as a sign that the 2017 criteria were being used effectively.⁠³⁴

What the hEDS and HSD criteria review study found

The International Consortium's criteria review study recruited 326 adults at eight clinical sites between 2022 and 2025, comparing people with hEDS, HSD and other chronic pain conditions.⁠³⁵ Early findings presented in 2025 showed that combinations of features separate hEDS and HSD from other conditions, three or more of four skin-related features being one strong example, while no single measure distinguished hEDS from HSD. Four extra joint measurements and a revised model are being tested, with final results due in December 2026.⁠^15,35

Vascular EDS in children: warning signs and emergencies

Vascular EDS is rare, affecting roughly 1 in 100,000 to 200,000 people, but it makes connective tissue very fragile, particularly in the blood vessels and hollow organs, and can cause life-threatening tears of the arteries and bowel.⁠¹² Its most common sign in childhood is easy bruising, sometimes with strikingly see-through skin.⁠¹³

Bowel rupture is uncommon in early childhood but begins to be seen in late childhood, when a collapsed lung can also occur and tends to recur.⁠¹³ There appears to be an increased risk of sudden death under age 20 in males, mostly in young people whose diagnosis had not yet been made.⁠¹³

Living with vascular EDS

• Confirm it with a genetic test

  COL3A1 testing is considered for anyone with a major criterion or several minor ones, particularly under age 40.⁠¹²

• Carry emergency information

  An emergency care card or letter, so emergency staff know the diagnosis and the plan.⁠^12,13

• Choose activity carefully

  Regular, low-intensity exercise; no contact or collision sports, heavy lifting, straining or sudden rises in blood pressure.⁠¹²

• Plan medical care

  Blood pressure kept in the normal range, regular vascular imaging, and elective procedures avoided where possible.⁠^12,13

• Find a specialist team

  Referral at diagnosis to a center with experience in vascular EDS; early diagnosis and appropriate care are shown to improve outcomes.⁠^12,13

Hypermobility, autism, ADHD and sensory processing

Children with HSD or hEDS are diagnosed with ADHD and autism more often than other children. In a Swedish study of 201 children with HSD or hEDS, 16% had a verified ADHD diagnosis and another 7% were being assessed, more than three times the expected rate of about 5%, and 6% had autism, about twice the expected rate.⁠²⁵ ADHD was more common with hEDS than with HSD, reaching 35% at ages 15 to 16.⁠²⁵ Read more about ADHD, autism and how autism and EDS are connected.

The explanation is not settled; proposed pathways include impaired proprioception overloading attention, pain affecting concentration, dysautonomia, and shared genetics.⁠²⁵ Autistic children also show greater joint mobility and, on average, walked 1.6 months later than their peers.⁠¹⁴

How is EDS treated in children?

There is no cure or disease-specific treatment for any type of EDS, so care addresses each child's symptoms, often with several professionals involved; physical therapy and pain management are key, whether the label is hEDS or HSD.⁠^1,4,9

Managing pain in children with EDS

Children are often not believed about their pain, and parents tend to underestimate how much pain their child feels, so a child's own report deserves to be taken seriously.⁠^8,22 Physical therapists can use heat, ice, TENS, taping, braces and splints alongside exercise, and pain medicine should be used only at the dose the prescriber gave.⁠^11,26 If your child takes too much of a medicine, or you are unsure about a dose, the national Poison Help hotline, 1-800-222-1222, reaches your local poison control center at any hour, and the call does not need to be an emergency.⁠⁴⁰

What to do when a joint slips out of place

Some joints go back on their own; a full dislocation often needs a doctor or physical therapist to put it back without harming the surrounding structures.⁠¹¹ While waiting, the Society's physiotherapy guidance is to stay calm, control the pain and let the muscles relax.⁠²⁶

1. Breathe slowly. Slow, deep breaths; panic brings more muscle spasm and pain.⁠²⁶
2. Use prescribed pain relief. Only at the dose the prescriber gave.⁠²⁶
3. Support the joint. Pillows or a sling, in the most comfortable position you can find.⁠²⁶
4. Try heat and distraction. A warm bath or wheat bag, and music, a movie or talking with family.⁠²⁶
5. Gentle massage. Around the joint, which can relax the muscles enough for it to slip back.⁠²⁶

Go to the hospital if the limb changes color from a lack of blood supply or goes completely numb, or if the joint has not gone back after a reasonable wait and your child is still struggling.⁠²⁶

Physical therapy for a child with EDS

Physical therapy plays a central role in managing hypermobility disorders.⁠⁸ Exercise strengthens the muscles that stabilize hypermobile joints, and the rule is start low and go slow: few repetitions, light loads and short sessions, increased gradually.⁠¹¹

1. Strength around unstable joints

   Movement control and strengthening of the stabilizing muscles, with low loads.⁠¹¹

2. Posture and everyday movement

   Better posture, and less painful ways to do daily tasks.⁠¹¹

3. Proprioception and balance

   Hypermobile children aged 8 to 16 have shown reduced balance, and poor proprioception has been linked with pain and gait problems.⁠⁸

4. Fitness and stamina

   Aerobic fitness is often low, probably from pain, inactivity and deconditioning, so it is rebuilt gradually.⁠⁸

5. A home program the family can keep up

   Children stick with exercise best when parents are motivated and exercise becomes a family activity.⁠⁸

The evidence is encouraging but thin. In the first randomized trial in hypermobile children, 57 children improved their pain whether they followed a general fitness program or one targeting the painful joints, and in a trial of children with hypermobile knees both exercise groups gained strength and lost pain; no type of exercise has proven better than another.⁠⁸ Sore muscles for a few days after starting are normal.⁠¹¹ Read more about physical therapy for children, or find a physical therapist near you.

Sports and exercise for children with EDS

The best activities build stability and control of movement. High-impact and contact sports such as rugby and American football are riskier, and should be discouraged when a child lacks the strength and joint control the sport demands.⁠¹¹

Many hypermobile children cut back: in one series 48% could not take part in physical education, and children with generalized hypermobility are less active in sports than their peers; a graduated return to sport or dance is the recommended route back.⁠⁸

Occupational therapy and speech therapy for EDS

Occupational therapists help children take part in daily life with more independence and comfort.⁠³² Speech-language pathologists play a central role in treating children's feeding and swallowing disorders.⁠⁴¹

Occupational therapy: handwriting, joint protection and daily tasks

• Handwriting and fine motor skills

  Help with writing, fine and gross motor skills and hand-eye coordination.⁠³²

• Joint protection

  The principles of joint protection, and ways to adapt tasks so they are easier on the hands.⁠³²

• Equipment and splints

  Assistive technology, and ring splints that limit finger hyperextension and help with writing and gripping.⁠^32,37

• Body awareness

  Proprioceptive training for awareness of the joints, plus motor planning and sensory processing differences.⁠³²

• Fatigue and pacing

  Pacing, energy conservation, rest and sleep.⁠³²

• School

  Training on school accommodations, and help with school-related difficulties and play.⁠³²

Read occupational therapy for EDS or find an occupational therapist.

Speech therapy: feeding, swallowing, jaw and voice

In hEDS, problems with the jaw joint (temporomandibular joint) are more common, and some people have trouble producing or sustaining their voice, or swallowing; reflux can add to swallowing and voice problems.⁠⁹ Jaw problems can limit how wide the mouth opens and make chewing hard.⁠⁴²

For a student, an individualized health plan for feeding or swallowing can be part of the IEP or 504 plan.⁠⁴¹ Our guide to speech therapy for EDS covers communication, feeding and swallowing.

EDS at school: 504 plans, IEPs and accommodations

EDS does not affect intelligence, but it often affects school.⁠¹⁶ In one clinic series of hypermobile children, 40% had handwriting difficulties, 24% reported problems at school, 41% missed time from school, and 48% could not take part in physical education.⁠⁸ Asking for accommodations early saves a great deal of stress.⁠³⁹

• A Section 504 plan

  Public schools must provide a free appropriate public education to each qualified student with a disability, whatever its severity; that includes a physical impairment, such as a musculoskeletal one, that substantially limits a major life activity.⁠^43,44

• An IEP under IDEA

  An individualized education program is a written plan for a child with a disability who needs special education; the other health impairment category covers limited strength, vitality or alertness from a chronic health problem that affects educational performance.⁠^45,46

Under IDEA, a child qualifies after an evaluation shows a disability that creates a need for special education and related services.⁠⁴⁶ Our sample letter for requesting a school evaluation shows how to ask for one in writing.

Fatigue, dizziness and POTS in children with EDS

Fatigue in EDS is more than tiredness: it is overwhelming physical and mental exhaustion, common and often underestimated, with causes that feed each other, from poor sleep and pain to deconditioning and dysautonomia.⁠³⁹ It also reduces muscle control and coordination, raising the risk of injury.⁠⁷

What is POTS, and why is it common with EDS?

Many people with EDS or HSD have symptoms on standing up (orthostatic intolerance), most often from low blood pressure or from postural orthostatic tachycardia syndrome (POTS), an abnormal rise in heart rate on standing without a drop in blood pressure; in 12- to 19-year-olds, a rise of at least 40 beats per minute.⁠³¹ In a pediatric POTS registry, 62% of patients had hEDS or HSD, with symptoms that started earlier and lasted longer.⁠¹⁴ A primary care provider can check heart rate and blood pressure lying and standing, and refer on if needed.⁠³¹

Managing fatigue day to day

Pacing, taking breaks and not doing too much at once, spreads limited energy through the day, and regular movement prevents deconditioning; sleep habits, relaxation, cognitive behavioral therapy and daylight help too.⁠³⁹ For children, working closely with the family and setting realistic goals matters most.⁠⁴⁷

Tummy troubles, bladder problems and headaches

Data on gut symptoms in children with hEDS are limited, but studies link childhood hypermobility with constipation, at rates of 11% to 38%.⁠²⁴ Stress incontinence affected 26% of the hypermobile children at the Sydney clinic and was linked with lower quality of life.⁠¹⁴ Headaches in hEDS have several possible causes, including migraine, muscle tension, dysautonomia, jaw joint problems and instability at the top of the neck.⁠⁹ See our guide to migraines in children.

Caring for a child with Ehlers-Danlos syndrome

Caring for a child with EDS means learning the condition, believing your child and keeping life about more than EDS; the Ehlers-Danlos Society's caregiver guidance comes down to a few habits.⁠⁴⁸

1. Learn how EDS affects your child

   Knowing their type and their particular problems helps at appointments and with family.⁠⁴⁸

2. Believe them, and encourage independence

   Some days they most need you to believe they are in pain or exhausted; other days, to help them solve problems with tools and pacing.⁠⁴⁸

3. Keep them moving

   Regular movement prevents deconditioning, and supports work alongside exercise, not instead of it.⁠^37,39

4. Protect joints and skin

   Discourage party tricks with the joints, and pad and protect fragile skin.⁠^23,26

5. Look after yourself

   Sleep, exercise, your own health and time for yourself are what let you keep caring.⁠⁴⁸

6. Remember life is more than EDS

   Make room for humor, adventures and conversations that have nothing to do with the condition.⁠⁴⁸

When bruises or injuries are mistaken for abuse

Some features of EDS, such as unexplained bruising, soft tissue injuries and dislocations, can look like signs of physical abuse, and in vascular EDS childhood bruising has been enough to raise the question.⁠^13,29 Children with hEDS can also present with symptoms that lead to a misdiagnosis of mental illness or to consideration of abuse.⁠³³ What helps is a confirmed diagnosis, a clear record of how the condition has affected your child, and an expert opinion in EDS.⁠²⁹

Support for the whole family

Feelings such as anxiety, anger, grief or guilt are normal for caregivers, and support groups, journaling or a counselor can help.⁠⁴⁸ For the child, care should include psychological approaches alongside physical therapy, both to relieve symptoms and to build coping skills.⁠²⁷

EDS life expectancy and outlook, by type

People with EDS generally have a normal life span and normal intelligence; the exception is the rare vascular type, with a greater risk of rupture of a major organ or blood vessel and a high risk of sudden death.⁠¹⁶

Possible long-term complications include chronic joint pain, early-onset arthritis and surgical wounds that fail to close.⁠¹⁶ In hEDS, osteoarthritis may start younger, because hypermobility increases wear on the joints.⁠⁹

When to see a doctor about EDS symptoms

Make an appointment if your child has symptoms of EDS, or if EDS runs in the family and you are concerned about the risk or are planning a family.⁠¹⁶ Some situations need care sooner.⁠^12,26

Find a physical therapist or an occupational therapist near you.

Related conditions and guides

Conditions and guides that often come up alongside the Ehlers-Danlos syndromes.

• Autism and EDS

  Why autistic people are more likely to have hypermobility and EDS, and the shared signs.

• Hypotonia (low muscle tone)

  What low muscle tone means, what causes it, and how therapy helps.

• Delayed motor milestones

  Milestones by age, and what to do if your child is not there yet.

• Dyspraxia and DCD

  Coordination difficulties in children: signs, diagnosis and treatment.

• Vestibular and proprioceptive processing

  The balance and body-position senses, and how they differ.

• Interoception

  How children sense hunger, thirst, pain and emotion from inside the body.

• Autistic burnout

  What autistic burnout is, and what research says helps recovery.

• Scoliosis in children

  How spinal curves are detected and monitored, and when bracing helps.

• Dysgraphia

  Who diagnoses handwriting difficulties, and how to request a school evaluation.

Sources

1. The Ehlers-Danlos Society. What is EDS? Checked October 7, 2026.
   Show the passageHide the passage

   “a group of 13 heritable connective tissue disorders”; “Some features are seen across all types of EDS, including joint hypermobility, skin hyperextensibility, and tissue fragility”; the table of types with prevalence, genes, inheritance and distinguishing features; hEDS “accounts for about 90% of EDS cases and is thought to affect at least 1 in 3,100-5,000 people”; “All other types of EDS are classified as ultra-rare”; “Each type of EDS is inherited in either a dominant or recessive inheritance pattern”; “There are no disease-specific treatments for any type of EDS”; people with EDS “often require multiple providers in different specialties”; the 1998 Villefranche classification “included 6 types of EDS”; “the terms EDS type 3 and EDS type III are no longer used”; “there is no reason to seek a new diagnosis” for those diagnosed with hEDS before 2017; “The classification of EDS and HSD will continue to evolve as we learn more about these conditions through research.”
2. Malfait F, Francomano C, Byers P, Belmont J, Berglund B, Black J, et al. The 2017 international classification of the Ehlers-Danlos syndromes. American Journal of Medical Genetics Part C: Seminars in Medical Genetics. 2017;175(1):8–26. doi:10.1002/ajmg.c.31552 (PMID 28306229).
   Show the passageHide the passage

   The classification of 13 subtypes, their inheritance and genes, and the clinical criteria for each, read from the copy the Ehlers-Danlos Society hosts: “the definite diagnosis relies for all subtypes, except hEDS, on molecular confirmation”; the adult Beighton cut-off “may prompt an over-diagnosis in children”; the features present at birth or in infancy for kEDS, aEDS, mcEDS, mEDS, dEDS, spEDS and BCS (“Kyphoscoliosis is usually present at birth or develops in infancy”), and the craniofacial features listed for the rare types.
3. The Ehlers-Danlos Society. Genetics and Inheritance of EDS and HSD. Checked October 7, 2026.
   Show the passageHide the passage

   “Genetic testing is available for every type of EDS except for hEDS”; “males and females have an equal chance of inheriting the genetic variant”; “each child of an affected parent has a 50% chance of having the condition”; the dominant and recessive types; a child who inherits EDS will “have the same type of EDS” but not necessarily the same symptoms; de novo variants; “Direct-to-consumer genetic testing services (such as 23andMe and Ancestry.com) are not helpful for diagnosing any type of EDS or HSD”; “all genetic testing should be ordered and interpreted by a medical professional.”
4. The Ehlers-Danlos Society. What is HSD? Checked October 7, 2026.
   Show the passageHide the passage

   “Most babies and children are naturally very flexible. Many people become less flexible as they grow, but hypermobility continues into adulthood for some, up to about 20% of people”; hypermobility without symptoms, called asymptomatic joint hypermobility, “does not need to be treated”; hypermobility “can also occur as part of a known syndrome, such as types of Ehlers-Danlos syndromes (EDS), Marfan syndrome, or Down syndrome”; the four types of HSD; the problems that show hypermobility is causing harm; “Chromosomal conditions such as Fragile X syndrome, Kabuki syndrome, Down syndrome” are among those ruled out; “Joint hypermobility syndrome (or benign joint hypermobility syndrome) is an outdated diagnosis that should no longer be used”; a child with HSD who later develops new features may move to hEDS; “At present, the principles and types of management are the same for both HSD and hEDS.”
5. The Ehlers-Danlos Society. 2023 Diagnostic Framework for Pediatric Joint Hypermobility. Checked October 7, 2026.
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   Published in May 2023 for people “from five years old through to biological maturity”, which is “the completion of puberty and bone growth or when a person reaches eighteen years old, whichever happens first”; the eight categories; “A Beighton score greater than or equal to 6 points is evidence of GJH in children before puberty”; “This is one point higher than the threshold for adults because children are typically more hypermobile than adults”; “Prepubescent children cannot be diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS) under the new guidelines”; the definitions of musculoskeletal complications, skin involvement and core comorbidities; “Infants and toddlers do not have sufficient bone maturity for a meaningful clinical assessment”; “A young person can change categories if their symptoms change.”
6. The Ehlers-Danlos Society. The Road to 2026: A Path Toward Progress. Checked October 7, 2026.
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   The outcomes “will be published in two special editions of the American Journal of Medical Genetics Part C”; the update of the classification criteria for all types of EDS and HSD “will be published on December 2, 2026”; guidance on the monogenic types the same day and on hEDS and HSD “in March 2027”, as is the diagnostic pathway; “updates and revisions to content, terminology, and timelines may occur throughout the development of the final publications.”
7. Tinkle B, Castori M, Berglund B, Cohen H, Grahame R, Kazkaz H, et al. Hypermobile Ehlers-Danlos syndrome (a.k.a. Ehlers-Danlos syndrome Type III and Ehlers-Danlos syndrome hypermobility type): clinical description and natural history. American Journal of Medical Genetics Part C: Seminars in Medical Genetics. 2017;175(1):48–69. doi:10.1002/ajmg.c.31538 (PMID 28145611).
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   The hypermobility phase dominates “the first several years of life with contortionism and propensity for sprains and dislocations”; pain “with fine motor or repetitive tasks such as handwriting is also commonly encountered”; “Easy fatigability may be a feature”; some children have dyspraxia with mild hypotonia and “non-specific developmental delay in gross and fine motor skills attainment”; the pain phase “typically starts in the second to the fourth decade of life”; “not every patient experiences all three phases”; “Fatigue decreases muscle control and coordination.”
8. Engelbert RH, Juul-Kristensen B, Pacey V, de Wandele I, Smeenk S, Woinarosky N, et al. The evidence-based rationale for physical therapy treatment of children, adolescents, and adults diagnosed with joint hypermobility syndrome/hypermobile Ehlers Danlos syndrome. American Journal of Medical Genetics Part C: Seminars in Medical Genetics. 2017;175(1):158–167. doi:10.1002/ajmg.c.31545 (PMID 28306230).
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   “Pain exacerbated by activity is a distinguishing feature”; 81% of children said exercise worsened their pain; the knee “and the shoulder, are the most commonly” affected sites of pain in children; the knee, ankle and shoulder the joints that most often give way; “parents have been shown to underestimate their child's perception of pain”; 36% poor coordination and 48% clumsiness; gross motor abilities reduced in 22%; “Late walking and clumsiness are characteristics” commonly reported by parents; 40% handwriting difficulties, 24% problems at school, 41% missed school, 48% unable to take part in physical education; poorer emotional functioning at 8 to 15; the two pediatric trials, in which both groups improved; “no convincing evidence for specific types of exercise”; orthotics for painful flexible flat feet; “A graduated return to higher levels of sport or dance is recommended.”
9. The Ehlers-Danlos Society. Hypermobile Ehlers-Danlos Syndrome (hEDS). Checked October 7, 2026.
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   “There is currently no laboratory test available to diagnose hEDS”; “The diagnosis of hEDS is given to adults who meet the clinical diagnostic criteria for hEDS”, while “Children and adolescents with generalized joint hypermobility can be assessed using the pediatric diagnostic framework”; “Key aspects of care include physical therapy and pain management”; reduced proprioception, dizziness on standing, headaches (from migraine, muscle tension, dysautonomia, craniocervical instability and temporomandibular joint dysfunction among other causes), sleep problems, anxiety, ADHD and autism; “Osteoarthritis may start at a younger age in people with hEDS”; temporomandibular joint problems “are more common” in hEDS; “Some people with hEDS have trouble producing or sustaining their voice”; “GERD can also cause swallowing and voice problems”; “Local anesthetics, such as lidocaine, are not as effective in some people with hEDS”; mitral valve prolapse and aortic root dilation in hEDS are usually mild.
10. The Ehlers-Danlos Society. hEDS Diagnostic Checklist. Checked October 7, 2026.
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    The printable checklist this page offers, Diagnostic Criteria for Hypermobile Ehlers-Danlos Syndrome (hEDS), read as the PDF: the 2017 Beighton cut-offs of 6 for pre-pubertal children and adolescents, 5 from puberty to age 50 and 4 over 50, with the five-question history when one point below; Features A, B and C; “The clinical diagnosis of hypermobile EDS needs the simultaneous presence of all criteria, 1 and 2 and 3”; the exclusions, including “neuromuscular disorders (e.g. Bethlem myopathy)”; “This diagnostic checklist is for doctors across all disciplines to be able to diagnose EDS.”
11. The Ehlers-Danlos Society. Physical Therapy. Checked October 7, 2026.
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    Exercise “improves muscle strength, which helps stabilize hypermobile joints”; “start low” and “go slow”; “People with unstable joints should avoid high-impact activities (such as running and jumping), combat sports, high-contact sports, and sports that focus on flexibility”; “Overstretching beyond the normal range of motion can be harmful. It may lead to instability if the muscles are unable to stabilize the joint”; “High-impact and contact sports should be discouraged when a person lacks the strength and joint control needed for that activity”; heat, ice, TENS, taping, braces and splints; dislocations “often require attention from a doctor or PT”; sore muscles after starting are “a normal response”; chiropractic adjustments and forceful manipulations “are contraindicated for those with EDS and HSD.”
12. The Ehlers-Danlos Society. Vascular Ehlers-Danlos Syndrome (vEDS). Checked October 7, 2026.
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    Roughly 1 in 100,000-200,000 people; “Characteristic facial features, including prominent eyes, narrow nose, thin lips, and attached or absent earlobes”; about half inherit it; genetic testing “should be considered if a person has any of the major criteria or several minor criteria, particularly in people under the age of 40”; avoid “Contact and collision sports” and heavy lifting and straining, with regular low-intensity exercise encouraged; “People with vEDS are encouraged to carry emergency information with them”; arterial dissection, rupture, pneumothorax and bowel rupture “should be treated as a medical emergency”; early diagnosis “is shown to improve outcomes in vEDS”; elective procedures should be avoided.
13. Byers PH, Belmont J, Black J, De Backer J, Frank M, Jeunemaitre X, et al. Diagnosis, natural history, and management in vascular Ehlers-Danlos syndrome. American Journal of Medical Genetics Part C: Seminars in Medical Genetics. 2017;175(1):40–47. doi:10.1002/ajmg.c.31553 (PMID 28306228).
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    “The most common presentation in childhood is easy bruising that may be accompanied by striking skin lucency and vascular visibility”; childhood bruising has raised “the question of abuse”; talipes, hip dislocation and the facial features “are often recognized only in retrospect”; “an increased risk of sudden death under the age of 20” in males; the diagnosis “is rarely considered in childhood, even in the face of unexplained bruising”; a median life span of about 51 years with a range of about 10 to 80; “Bowel rupture is uncommon in early childhood”; colon rupture presents as “rapid crescendo of unremitting pain, generally in the lower left quadrant”; the carotid-cavernous fistula signs quoted on this page; an emergency care card; at diagnosis a child “should be referred to a center in which there is both” experience and expertise.
14. Tofts LJ, Simmonds J, Schwartz SB, Richheimer RM, O'Connor C, Elias E, et al. Pediatric joint hypermobility: a diagnostic framework and narrative review. Orphanet Journal of Rare Diseases. 2023;18(1):104. doi:10.1186/s13023-023-02717-2 (PMID 37143135).
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    The International Consortium's pediatric framework: “hEDS is reserved for biologically mature adolescents who meet the 2017 criteria, which also covers even rarer types of Ehlers–Danlos syndrome at any age”; children's high hypermobility makes it hard to tell “a normal physical trait from those with an underlying disorder”; “Hypermobility decreases during pediatric years, probably later in adolescent females than males”; “we do not recommend genetic testing on all children with GJH, or HSD or hEDS”; targeted genetic testing “currently has an 11.5% yield”; in a Sydney cohort of 89 children aged 6 to 16, pain in multiple joints in 94%, knee 63%, instability 67% (knee, mainly the patella, 35%), any gut symptom 54%, stress incontinence 26%, orthostatic intolerance 39%; adolescents have “a notably higher incidence of initial and recurrent patella dislocation compared to adults”; in a pediatric POTS registry 62% had hEDS/HSD; a Welsh registry odds ratio of 4.16 for coded mental disorders in children; joint hypermobility syndrome in 37% of children with DCD against 7.4%; autistic children “on average walked 1.6 months later than their non-autistic peers.”
15. The Ehlers-Danlos Society. The Road to 2026 FAQs. Checked October 7, 2026.
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    “For those who already have a diagnosis using one of the pre-2026 frameworks there is no need to be reevaluated”; the updated classification “will recommend that the new information be used by clinicians and researchers moving forward”; “there is currently no reliable laboratory test to confirm or rule out hEDS or HSD”; several biomarker studies are under way; criteria review findings “are being published in December 2026.”
16. MedlinePlus, US National Library of Medicine. Ehlers-Danlos syndrome. Review date November 6, 2024. Checked October 7, 2026.
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    Collagen gives strength and structure to skin, bone, blood vessels and internal organs; symptoms include “Increased joint mobility, joints popping, early arthritis” and flat feet; tests include an echocardiogram; “There is no specific cure for EDS”; “Physical therapy or an evaluation by a specialist in rehabilitation medicine is often needed”; “People with EDS generally have a normal life span. Intelligence is normal”; complications include “Early-onset arthritis” and “Failure of surgical wounds to close”; “Contact your provider for an appointment if you or your child has symptoms of EDS”; “Genetic counseling is recommended for prospective parents with a family history of EDS.”
17. MedlinePlus Genetics, US National Library of Medicine. Ehlers-Danlos syndrome. Checked October 7, 2026.
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    “Infants and children with hypermobility often have weak muscle tone (hypotonia), which can delay the development of motor skills such as sitting, standing, and walking”; “In the arthrochalasia type of Ehlers-Danlos syndrome, infants have hypermobility and dislocations of both hips at birth”; classical-type scars that “widen over time”; in the kyphoscoliotic type, a curve that “worsens over time and can interfere with breathing”; the inheritance of each type; the range “from mildly loose joints to life-threatening complications.”
18. The Ehlers-Danlos Society. Assessing Joint Hypermobility. The nine Beighton movements as described here; “A positive Beighton score is any score greater than or equal to 5/9 points in adults, 6/9 points in children (before puberty), and 4/9 points in adults over age 50.” Checked October 7, 2026.
19. Aubry-Rozier B, Schwitzguebel A, Valerio F, Tanniger J, Paquier C, Berna C, et al. Are patients with hypermobile Ehlers-Danlos syndrome or hypermobility spectrum disorder so different? Rheumatology International. 2021;41(10):1785–1794. doi:10.1007/s00296-021-04968-3 (PMID 34398260).
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    97 adults (61 hEDS, 36 HSD), median age 40: “Three items from CSS-16 (pain, motricity problems, and bleeding) were significantly more severe with hEDS than HSD”; a “similar spectrum of extra-articular manifestations”; “Long-term improvement was observed in > 50% of patients in both groups” after the same coordinated physical therapy.
20. Ritelli M, Chiarelli N, Cinquina V, Vezzoli M, Venturini M, Colombi M. Looking back and beyond the 2017 diagnostic criteria for hypermobile Ehlers-Danlos syndrome: a retrospective cross-sectional study from an Italian reference center. American Journal of Medical Genetics Part A. 2024;194(2):174–194. doi:10.1002/ajmg.a.63426 (PMID 37774134).
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    From the abstract: 327 patients from 213 families diagnosed under the older criteria; the 2017 criteria “have faced criticism for being too stringent”, and the authors propose that they “should be made less stringent to include a greater number of patients who are currently encompassed within the HSD category.”
21. Castori M, Tinkle B, Levy H, Grahame R, Malfait F, Hakim A. A framework for the classification of joint hypermobility and related conditions. American Journal of Medical Genetics Part C: Seminars in Medical Genetics. 2017;175(1):148–157. doi:10.1002/ajmg.c.31539 (PMID 28145606).
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    The four HSDs; generalized HSD is the category where “usually fall most patients with GJH” who do not meet the full hEDS criteria; peripheral joint hypermobility “is common in infants, toddlers, and children.”
22. Chopra P, Tinkle B, Hamonet C, Brock I, Gompel A, Bulbena A, et al. Pain management in the Ehlers-Danlos syndromes. American Journal of Medical Genetics Part C: Seminars in Medical Genetics. 2017;175(1):212–219. doi:10.1002/ajmg.c.31554 (PMID 28186390).
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    Early pain includes growing pains “mostly localized to the knees/thighs”; “Children are often not believed by practitioners about their pain”; chronic pain, especially abdominal pain, is “often misdiagnosed as a behavioral condition” in children and young adults.
23. The Ehlers-Danlos Society. Skin Features of EDS. Checked October 7, 2026.
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    The skin features of each type; in cEDS “Extensive skin involvement, usually apparent from a very young age”; “Some features, like translucent skin, may be harder to see on brown or black skin”; “Translucent skin does not necessarily mean a person has any type of EDS”; for children with fragile skin, covering furniture edges, padding, shin guards and sun protection, and counseling “about the risks of participating in rough activities (horseplay) and contact sports”; stitches “left in for roughly twice as long as they would normally be”; “there is no scientific evidence to support the use of supplements to help the skin in EDS.”
24. Fikree A, Chelimsky G, Collins H, Kovacic K, Aziz Q. Gastrointestinal involvement in the Ehlers-Danlos syndromes. American Journal of Medical Genetics Part C: Seminars in Medical Genetics. 2017;175(1):181–187. doi:10.1002/ajmg.c.31546 (PMID 28186368).
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    “Data on gastrointestinal manifestations in children with hEDS is limited”; studies found “constipation rates ranging from 11% to 38% in hypermobile children”, and gut symptoms in 54% of children with generalized hypermobility in one study.
25. Kindgren E, Quiñones Perez A, Knez R. Prevalence of ADHD and autism spectrum disorder in children with hypermobility spectrum disorders or hypermobile Ehlers-Danlos syndrome: a retrospective study. Neuropsychiatric Disease and Treatment. 2021;17:379–388. doi:10.2147/NDT.S290494 (PMID 33603376).
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    201 children aged 6 to 18 at a Swedish pediatric clinic: “16% had a verified ADHD diagnosis and a further 7% were undergoing ADHD diagnostic investigation”; “ASD had been verified in 6% of the children”; “Of those with ASD, 92% had sleep problems”; ADHD in 35% of those with hEDS at 15 to 16; the ADHD rate is “more than three times higher than the expected rate (about 5%)” and autism “approximately twice the expected rate”; pain in 78% and fatigue in 57%; “four different but not mutually exclusive pathways” proposed between ADHD and hypermobility; children with these diagnoses “may need to be screened for neuropsychiatric symptoms and preferably also for sleep disorders.”
26. The Ehlers-Danlos Society. Dislocation/Subluxation Management. By Jason Parry, clinical specialist physiotherapist. Checked October 7, 2026.
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    On childhood party tricks: “Repeated overstretching to that degree will only exacerbate the laxity and the chances of the joints slipping out of place”; the six principles (breathe, painkillers “according to the dosage indicated by your prescriber”, support the joint, heat, distraction, gentle massage); get help “If the limb starts to change color due to a lack of blood supply. If your limb goes completely numb”; prevention through physical therapy and “Rehab to improve proprioception.”
27. Bulbena A, Baeza-Velasco C, Bulbena-Cabré A, Pailhez G, Critchley H, Chopra P, et al. Psychiatric and psychological aspects in the Ehlers-Danlos syndromes. American Journal of Medical Genetics Part C: Seminars in Medical Genetics. 2017;175(1):237–245. doi:10.1002/ajmg.c.31544 (PMID 28186381).
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    A strong association with anxiety disorders, and “limited but growing evidence” for depression; the research on mood disorders is significantly “smaller compared to anxiety disorders”; proposed mechanisms include “increased exteroceptive and interoceptive mechanisms and decreased proprioception”; “Management of these patients should include psychiatric and psychological approaches.”
28. Bowen JM, Sobey GJ, Burrows NP, Colombi M, Lavallee ME, Malfait F, et al. Ehlers-Danlos syndrome, classical type. American Journal of Medical Genetics Part C: Seminars in Medical Genetics. 2017;175(1):27–39. doi:10.1002/ajmg.c.31548 (PMID 28192633).
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    “Bruising is generally a feature seen when children start to crawl and walk”; “Hypermobility may delay motor development, but intellectual development is unaffected”; “Epicanthal folds are often seen in childhood”; children “benefit from protective pads and bandages”; physiotherapy is beneficial for children “with hypotonia and delayed motor development”; swimming and light strengthening help, while gymnastics and repetitive heavy lifting “are not advisable”; avoid showing off hypermobility and “excessive stretching of the hypermobile joints”; joint hypermobility is best managed by rheumatology, physiatry and sports medicine with physical and occupational therapy; “About 50% of cases are thought to be de novo.”
29. The Ehlers-Danlos Society. Child Protection, EDS, and HSD. Checked October 7, 2026.
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    “Signs of physical abuse include things like unexplained bruising, soft tissue injuries, and dislocations. These can also occur naturally to varying degrees in the different types of EDS”; staff “are obliged to report their concerns”; what helps: a confirmed diagnosis, a record of “how the condition has affected them to date” and “an expert opinion in EDS and the heritable disorders of connective tissue.”
30. The Ehlers-Danlos Society. Are the Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders Rare or Common? Checked October 7, 2026.
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    The combined prevalence of HSD and hEDS “is in the order of 1 in 600 to 1 in 900”; quoting a 2021 editorial: “Too often there is more than a decade delay in diagnosis” and management of many concerns “is well within the ability of most generalists with specialist support when needed.”
31. The Ehlers-Danlos Society. Dysautonomia. Checked October 7, 2026.
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    People with EDS and HSD “most commonly have a form of orthostatic intolerance”; POTS is “an abnormal increase in heart rate when standing without a drop in blood pressure”, with a rise of at least 40 beats per minute “in people 12 to 19 years old”; the everyday measures listed on this page, including fluids and salt as advised by a doctor; a primary care provider can refer “to a specialist with more experience in this area”, “such as a cardiologist or neurologist.”
32. The Ehlers-Danlos Society. Occupational Therapy. Checked October 7, 2026.
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    Recommendations for “Strengthening and rehabilitation”, education, environmental and activity modifications and assistive technologies; training on “School and work accommodations”; help with fatigue, coordination, handwriting, joint protection, motor planning, school-related difficulties, sensory processing, play and fine and gross motor skills; hand therapy with “Proprioceptive training to improve awareness of the joints”; occupational therapists with pain management experience “can assist with pacing, energy conservation, and joint protection education.”
33. Demmler JC, Atkinson MD, Reinhold EJ, Choy E, Lyons RA, Brophy ST. Diagnosed prevalence of Ehlers-Danlos syndrome and hypermobility spectrum disorder in Wales, UK: a national electronic cohort study and case-control comparison. BMJ Open. 2019;9(11):e031365. doi:10.1136/bmjopen-2019-031365 (PMID 31685485).
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    6,021 people with a coded diagnosis (70% women); “72% of men were diagnosed during childhood (age <18 years) in contrast to only 41% of women”; “It is well-known that EDS is poorly recognised in children”; children with hEDS “often present with symptoms that can lead to a misdiagnosis of mental illness or consideration of child abuse.”
34. The Ehlers-Danlos Society. The HEDGE Study. Checked October 7, 2026.
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    “DNA from 1,000 people with hEDS and 45 with HSD has been sequenced”; participants from 86 countries; “No single gene explains hEDS or HSD yet”; fewer than 1% had variants linked to another connective tissue condition, showing “that the 2017 criteria were used effectively by clinicians”; MTHFR: “analysis showed no connection to hEDS”; TNXB rare variants “were 3-5 times more common in hEDS, but still very uncommon (about 1%)”; KLK15 variants “were not more common in participants than in controls”; 81 major symptom groups and more than 900 less common symptoms; a genetic test is not coming soon, as “the findings point to multiple rare genetic variants and complex interactions.”
35. The Ehlers-Danlos Society. hEDS and HSD Criteria Review Study. Checked October 7, 2026.
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    2022-2025, “326 participants across eight international clinical sites”, adults 18 or older, compared with controls who have other chronic pain conditions; the four added joint assessments (shoulder flexion, forearm rotation, ankle dorsiflexion, big toe dorsiflexion); “the presence of three-or-more of four skin-related parameters, which strongly predicted hEDS/HSD classification”; “no single measure or variable clearly distinguishes hEDS from HSD”; “hEDS and HSD exist on a shared biological spectrum”; results “are expected in late 2026.”
36. MedlinePlus, US National Library of Medicine. Collapsed lung (pneumothorax). Review date January 8, 2025. Symptoms include “Sharp chest or shoulder pain, made worse by a deep breath or a cough” and shortness of breath. Checked October 7, 2026.
37. The Ehlers-Danlos Society. Braces, Splints & Mobility Aids. Checked October 7, 2026.
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    “It is important to continue to perform appropriate exercise alongside the use of these supports”; proprioceptive braces, functional splints for “writing and gripping (for example, ring splints for the fingers)”, resting splints; “Wheelchairs are not recommended as standard practice”; in-shoe orthotics; ring splints “can help to limit hyperextension, instability, and associated pain in the finger and thumb joints.”
38. Ericson WB, Wolman R. Orthopaedic management of the Ehlers-Danlos syndromes. American Journal of Medical Genetics Part C: Seminars in Medical Genetics. 2017;175(1):188–194. doi:10.1002/ajmg.c.31551 (PMID 28192621). “Non-operative treatment is preferable”; “EDS patients have a higher incidence of bleeding complications, and wider scars, and less predictable healing”; care should involve a surgeon with experience of EDS.
39. The Ehlers-Danlos Society. Fatigue in EDS and HSD. Checked October 7, 2026.
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    “Fatigue is a common and often underestimated symptom”; the causes listed on this page; “each of these tends to aggravate the others”; pacing, movement, sleep hygiene, relaxation, cognitive behavioral therapy and daylight; “Extended periods of inactivity should be avoided”; “Asking for school or workplace accommodations early can save a person so much stress and frustration”; frequent breaks “because it is often more difficult to sustain an activity than it is to actually perform the activity”; “There is no one proven diet or supplement that improves fatigue”; energy drinks should be avoided.
40. MedlinePlus, US National Library of Medicine. Ibuprofen overdose. Review date January 8, 2025. Checked October 7, 2026.
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    “The local poison control center can be reached directly by calling the national toll-free Poison Help hotline (1-800-222-1222) from anywhere in the United States”; “It does NOT need to be an emergency. You can call for any reason, 24 hours a day, 7 days a week.”
41. American Speech-Language-Hearing Association. Pediatric Feeding and Swallowing (Practice Portal). Checked October 7, 2026.
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    “SLPs play a central role in the assessment, diagnosis, and treatment of infants and children with swallowing and feeding disorders”; signs include gagging and coughing, slow chewing and “Stress and distress during mealtimes”; an individualized health plan “may be developed as part of the IEP or 504 plan.”
42. Mitakides J, Tinkle BT. Oral and mandibular manifestations in the Ehlers-Danlos syndromes. American Journal of Medical Genetics Part C: Seminars in Medical Genetics. 2017;175(1):220–225. doi:10.1002/ajmg.c.31541 (PMID 28192626). Common symptoms of temporomandibular disorder include “limitation of opening”, “inability to chew” and “pain in front of the ear.”
43. Electronic Code of Federal Regulations, US Department of Education regulations. 34 CFR 104.33 – Free appropriate public education. Checked October 7, 2026.
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    The Section 504 regulation: a recipient that operates a public elementary or secondary education program “shall provide a free appropriate public education to each qualified handicapped person who is in the recipient's jurisdiction, regardless of the nature or severity of the person's handicap.”
44. Electronic Code of Federal Regulations, US Department of Education regulations. 34 CFR 104.3 – Definitions. A person with a disability under Section 504 “has a physical or mental impairment which substantially limits one or more major life activities”; the body systems listed include the musculoskeletal system. Checked October 7, 2026.
45. Electronic Code of Federal Regulations, US Department of Education regulations. 34 CFR 300.320 – Definition of individualized education program. An IEP is “a written statement for each child with a disability that is developed, reviewed, and revised in a meeting”. Checked October 7, 2026.
46. Electronic Code of Federal Regulations, US Department of Education regulations. 34 CFR 300.8 – Child with a disability. The IDEA regulation: “Other health impairment means having limited strength, vitality, or alertness”, due to chronic or acute health problems, that “Adversely affects a child's educational performance.” Checked October 7, 2026.
47. Hakim A, De Wandele I, O'Callaghan C, Pocinki A, Rowe P. Chronic fatigue in Ehlers-Danlos syndrome-Hypermobile type. American Journal of Medical Genetics Part C: Seminars in Medical Genetics. 2017;175(1):175–180. doi:10.1002/ajmg.c.31542 (PMID 28186393). “Engagement with the family is particularly important for children and young people”, with realistic goals and timelines.
48. The Ehlers-Danlos Society. Caring for Someone with EDS or HSD. Checked October 7, 2026.
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    “Learn all you can about EDS and HSD and how it presents in your loved one”; “simply for you to believe that they are in pain”; encourage them “to be more independent”; feelings like “anxiety, anger, grief, or guilt” are normal; “a professional counselor can help you both”; “Take care of yourself”; “Remember that life is more than EDS and HSD.”

Medical disclaimer. This page is for general educational purposes and does not constitute medical advice, diagnosis, or treatment. Always consult a qualified healthcare provider about your child. If your child has lost skills they previously had, contact their doctor promptly.