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Living with hEDS

Information, shared experiences and research connections for people living with hEDS and those who support them.

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Understanding hEDS

Hypermobile Ehlers-Danlos syndrome (hEDS) is an inherited connective tissue disorder in which joints move more than usual, and it is the least severe form of EDS, though significant problems can still happen.

It is thought to be genetic, but the gene or genes behind most cases have not been found yet, and symptoms can start at any time in life.

Signs & symptoms

People with hEDS may notice:

  • Very flexible joints, both large and small
  • Joints that dislocate or feel unstable
  • Long-lasting joint and muscle pain
  • Soft, smooth, slightly stretchy skin that bruises easily
  • Tiredness (fatigue)
  • Flat feet

Tell your care team about new or changing symptoms.

Diagnosis

  1. Exam and history

    A doctor asks about your symptoms and family history and checks for joint looseness and soft or stretchy skin.

  2. Ruling out other types

    Since the gene for most hEDS is not known, genetic or other tests may be used mainly to check for other types of EDS or similar conditions.

  3. Other checks

    Your doctor may suggest tests such as a heart ultrasound (echocardiogram), depending on your symptoms.

Care & treatment

Your plan
There is no specific cure, so care focuses on managing each symptom as it comes up.
Treatment
Medicines and physical therapy are often part of care, and some people see a rehabilitation medicine specialist.
Joint care
Learning ways to protect your joints and prevent injuries is an important part of daily life.

Discuss benefits, risks and follow-up with your care team.

Everyday life

A few habits can make it easier to share what is going on:

  • Keep a log of dislocations, injuries and pain flares, including what you were doing at the time.
  • Ask your physical therapist which activities and exercises are safest for your joints.
  • Keep a list of your care team, diagnoses and family health history to bring to new appointments.
Bring these questions to your next doctor visit
How was my diagnosis made, and do I need tests to rule out other types of EDS?
What exercises or physical therapy would help protect my joints?
Which symptoms, like a new dislocation or heart symptoms, should I report right away?
Sources: NIH GARD — Ehlers-Danlos syndrome, type 3 · MedlinePlus Genetics — Ehlers-Danlos syndrome · MedlinePlus — Ehlers-Danlos syndrome · MedlinePlus Medical Encyclopedia — Ehlers-Danlos syndromePage drafted from NIH sources · Know Rare editorial review pending. General information to support conversations with your care team.

You are more than your diagnosis

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Explore research for hEDS

Explore actively recruiting hEDS studies with HealthSpark.

HealthSpark

Find actively recruiting studies for hEDS with HealthSpark. Share your city to explore research near you.

  • Phase 3 studies first, with nearest research center
  • Study information from ClinicalTrials.gov
  • Eligibility is confirmed by the study team

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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.

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