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Hypermobile Ehlers-Danlos Syndrome (formerly Type 3)

What is Hypermobile Ehlers-Danlos Syndrome (formerly Type 3)?

Hypermobile Ehlers-Danlos syndrome (hEDS), formerly known as type 3 EDS, is a genetic connective tissue disorder characterized primarily by joint hypermobility, musculoskeletal complications, and a range of systemic symptoms. It is considered the most common form of Ehlers-Danlos syndrome (EDS) and affects connective tissues throughout the body, leading to symptoms that can impact the joints, skin, and various organ systems. Unlike some other forms of EDS, hEDS does not have a known molecular genetic marker, making diagnosis reliant on clinical criteria alone.
 

 

Synonyms

  • Ehlers-Danlos syndrome type 3
  • Joint hypermobility syndrome (JHS)

Hypermobile Ehlers-Danlos syndrome (hEDS), formerly known as type 3 EDS, is a genetic connective tissue disorder characterized primarily by joint hypermobility, musculoskeletal complications, and a range of systemic symptoms. It is considered the most common form of Ehlers-Danlos syndrome (EDS) and affects connective tissues throughout the body, leading to symptoms that can impact the joints, skin, and various organ systems. Unlike some other forms of EDS, hEDS does not have a known molecular genetic marker, making diagnosis reliant on clinical criteria alone.
 

Acknowledgement of Hypermobile Ehlers-Danlos Syndrome (formerly Type 3) has not been added yet.

The estimated prevalence of hEDS is 1 in 3,000 to 1 in 5,000 people. It is the most common type of EDS, accounting for 80-90% of all cases. It affects all ethnicities and both genders, although is more frequently diagnosed in females. Milder cases of hEDS are likely underdiagnosed.

 

Name Abbreviation
Ehlers-Danlos syndrome type 3 EDS type 3
Joint hypermobility syndrome (JHS)

Unlike other EDS types where specific gene mutations have been identified, the genetic basis for hEDS is unknown at this time. Familial cases suggest an autosomal dominant pattern (see RareShare Guide on Genetic Inheritance) for some patients, but new de novo cases can also occur, complicating the picture. This leads to the view that multiple genes, epigenetic DNA modifications, or interactions with environmental factors may be involved.


 

Key clinical features include:

  • Generalized joint hypermobility (unusually flexible joints)

  • Chronic joint and limb pain

  • Frequent joint dislocations or subluxations (partial dislocations)

  • Fatigue and sleep disturbances

  • Soft, stretchy, or velvety skin

  • Easy bruising

  • Delayed wound healing

  • Proprioceptive impairment

  • Dysautonomia (e.g., dizziness, fainting, rapid heartbeat on standing)

  • Gastrointestinal issues

  • Anxiety, depression, and other mood disorders

 

 

As there is no genetic test for hEDS, clinical diagnosis is based on the 2017 hEDS international criteria, which include:

  • Generalized joint hypermobility (typically based on a standardized Beighton scoring assessment of hands, elbows, knees and spine)

  • Two or more of the following:

    • Musculoskeletal complications (e.g., pain, dislocations)

    • Positive family history

    • System manifestations of a connective tissue disorder

  • Exclusion of other connective tissue disorders and alternative diagnoses

Associated symptoms like dysautonomia, gastrointestinal complaints, and mood disorders are common but not part of the formal diagnostic criteria. Many people with significant symptoms may not meet full hEDS criteria and be diagnosed with Hypermobility Spectrum Disorder (HSD), which is classified into generalized (hypermobility throughout body), peripheral (hands and/or feet only), and localized (single joint or area) types.

 

The Beighton score is used to determine joint hypermobility. Scores of 5 or greater defines generalized joint hypermobility. The diagnostic score required is lower (4 or greater) for individuals aged 50+ and higher (6 or greater) for young children.  
 

There is no cure for hEDS. Treatment is based on symptom management, including:

  • Physical therapy to strengthen muscles and stabilize joints

  • Pain management: Medications, physical modalities, and psychological support for chronic pain 

  • Lifestyle modifications such as avoiding activities that strain hypermobile joints, activity pacing, and occupational therapy with assistive devices to aid with activities of daily living

  • Psychological support, especially for coping with chronic illness

  • Treatment of associated symptoms such as autonomic dysfunction, gastrointestinal issues, and mood disorders. 

Multidisciplinary care is often required.

Disorder treatments vary depending on the symptoms present. Physical therapy can be used to help strengthen muscles and help with joint stability. In some affected individuals with more severe joint instability, braces, wheelchairs, or other assistive devices may be required. Wheelchairs or scooters can help offload the stress on the lower-extremities. Chronic muscle and bone pain may be managed using pain medications. Lastly, counselling can be useful to help with the psychological and pain associated with the disease.

 

Hypermobile Ehlers-Danlos syndrome is a chronic, lifelong condition. The prognosis in terms of symptom severity and functional impact is highly variable among patients. Life expectancy is generally normal, but quality of life may be reduced due to pain, disability and associated symptoms. Early diagnosis and supportive interventions can improve quality of life.

 

If you are searching for medical advice, specialists in hEDS can be found through support and advocacy groups, or directories such as the EDS Medical Professionals Directory. Some support groups available to aid individuals and families affected by hEDS such as:

  • EDS Awareness
  • Ehlers-Danlos Society
  • Ehlers-Danlos Support UK

 

  1. Malfait, F., Francomano, C., Byers, P., et al. (2017). “The 2017 International Classification of the Ehlers–Danlos Syndromes.” American Journal of Medical Genetics Part C, 175C(1), 8–26. https://doi.org/10.1002/ajmg.c.31552.

  2. The Ehlers-Danlos Society:  Hypermobile Ehlers-Danlos syndrome (hEDS).

  3. Riley B. (2020). “The Many Facets of Hypermobile Ehlers-Danlos Syndrome.” J Am Osteopath Assoc. 120(1):30-32. doi: 10.7556/jaoa.2020.012. PMID: 31904772.

  4. Tinkle B, Castori M, Berglund B, Cohen H, Grahame R, Kazkaz H, Levy H. (2017). “Hypermobile Ehlers–Danlos syndrome (a.k.a. Ehlers–Danlos syndrome Type III and Ehlers–Danlos syndrome hypermobility type): Clinical description and natural history.” Am J Med Genet Part C Semin Med Genet 175C:48–69. https://www.ehlers-danlos.com/wp-content/uploads/2017/03/2017-American_Journal_of_Medical_Genetics_Part_C__Seminars_in_Medical_Genetics-8.pdf.

  5. Hypermobile Ehlers-Danlos Syndrome: https://www.ncbi.nlm.nih.gov/books/NBK1279/.

  6. Hypermobility Syndrome (Joint Hypermobility Syndrome)Medicine Net: https://www.medicinenet.com/hypermobility_syndrome/article.htm#what_causes_joint_hypermobility_syndrome.

  7. Hypermobile Ehlers-Danlos syndromeNational Center for Advancing Translational Sciences Genetic and Rare Diseases Information Center:https://rarediseases.info.nih.gov/diseases/2081/hypermobile-ehlers-danlos-syndrome.


 

2021 EDS Cognition study recruitment Created by eds-cognition_greg
Last updated 30 May 2021, 06:36 PM

Hello! Created by starscream
Last updated 8 Jun 2020, 06:06 PM

Posted by starscream
8 Jun 2020, 06:06 PM

I'm new and just wanted to reach out and say hello. I've never gotten to talk to anyone else with EDS before so I'm really happy that I found this site. Hope you're all doing well in quarantine. 

-Ali

Hello my follow Zebras Created by InfernoFire
Last updated 8 Aug 2014, 05:33 PM

Posted by eulalia
8 Aug 2014, 05:33 PM

Hello. That's great you got the diagnosis so young - sometimes people go through years or even decades of incorrect or ambiguous diagnosis. Do you use any other online groups? Here's are some links to "active groups":http://www.pinterest.com/OREDS/forums-support-eds-ehlers-danlos-syndrome/. Lot's of other info linked from the "home page":http://www.pinterest.com/OREDS/ too. What's on your mind today?

Posted by lancastermtn
21 Jul 2014, 06:00 AM

I have EDS type III with cross over of others. I look forward to discussing daily life with this ever morphing disorder. Each day presents new challenges and learning new ways to adapt so EDS doesn't rule my life. It's very frustrating and hard on my family members to see me in so much pain. Have you read The spoon theory yet? Google it or go to...www.idontlooksick.com I believe. Great articles.

Posted by InfernoFire
30 May 2014, 03:59 AM

Hey I am Jess I am 23 and I have suspected type 3 and 4 Ehlers Danlos Syndrome. I am looking for other sufferers to chat with and talk about the experiences of this frustrating disorders.

For Doux Created by kaycee
Last updated 19 Feb 2011, 05:15 PM

Posted by kaycee
19 Feb 2011, 05:15 PM

above message was for doux..kaycee

Posted by kaycee
19 Feb 2011, 05:14 PM

I would like to ask you some questions if you come back to the sight,,my family members have ehlers danlos type symptoms but we are also being evaluated for andersen tawil syndrome another condition related to chromosome 17..You seem to have some of the facial features of andersen tawil

Hello Created by kaycee
Last updated 29 Sep 2009, 02:21 AM

Posted by kaycee
29 Sep 2009, 02:21 AM

Hello everyone!! How is everyone. No one has started a discussion yet so I thought i would get you guys going and ask how everyone found out about ehlers danlos and perhaps how you were diagnosed,, dont be afraid to post questions and ask for input from others as that is why most of us are here!! kaycee i have aquestion for doux if he comes back!!

Community Resources
Title Description Date Link
Ehlers Danlos National Foundation

Ehlers Danlos National Foundation

03/20/2017
Ehlers-Danlos Syndrome, Hypermobility Type

GeneTests description for EDS III.

03/20/2017

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2021 EDS Cognition study recruitment

Created by eds-cognition_greg | Last updated 30 May 2021, 06:36 PM

Hello!

Created by starscream | Last updated 8 Jun 2020, 06:06 PM

Hello my follow Zebras

Created by InfernoFire | Last updated 8 Aug 2014, 05:33 PM

For Doux

Created by kaycee | Last updated 19 Feb 2011, 05:15 PM

Hello

Created by kaycee | Last updated 29 Sep 2009, 02:21 AM


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