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PubMed This is a summary of 74 peer-reviewed journal articles Updated
Physical Therapy

Your Complete Guide to Hypermobile Ehlers-Danlos Syndrome (hEDS)

At a Glance

Hypermobile Ehlers-Danlos Syndrome (hEDS) is a multisystemic connective tissue disorder often accompanied by POTS and MCAS. Diagnosis relies on the 2017 clinical criteria and Beighton score. Management requires multidisciplinary care, physical therapy, and symptom pacing to improve quality of life.

Receiving a diagnosis of Hypermobile Ehlers-Danlos Syndrome (hEDS) or Hypermobility Spectrum Disorder (HSD) is often a life-changing event. For many patients, it marks the end of a grueling, decade-long “diagnostic odyssey” filled with unexplained pain, fatigue, and frustration.

This guide is designed to help you navigate your new reality. It will break down the science of your condition, validate your experiences, and provide you with actionable tools to advocate for yourself in the medical system. hEDS is a complex, multisystemic condition, but with the right knowledge and a dedicated care team, you can manage your symptoms and improve your quality of life.

Navigating This Guide

To help you understand your diagnosis and build an effective care plan, we have broken down the information into the following sections:

01

The Path to Answers: Understanding Your hEDS Diagnosis

Learn about getting diagnosed with Hypermobile Ehlers-Danlos Syndrome (hEDS) and HSD. Understand clinical criteria, the diagnostic odyssey, and next steps.

02

Connecting the Dots: Symptoms and the Diagnostic Odyssey

Explore the hEDS diagnostic odyssey. Learn how hypermobile Ehlers-Danlos connects to POTS, MCAS, GI issues, and common misdiagnoses like fibromyalgia.

03

The Diagnostic Puzzle: Criteria and Biological Basis of hEDS

Learn how Hypermobile Ehlers-Danlos Syndrome (hEDS) is diagnosed using the 2017 criteria. Understand the Beighton score, systemic signs, and genetic testing.

04

Building Your Care Plan: Multidisciplinary Management of hEDS

Learn how to build a multidisciplinary care plan for hypermobile Ehlers-Danlos syndrome (hEDS). Discover treatments for joint instability, POTS, and MCAS.

05

Building Your Care Team and Navigating Daily Life

Learn how to build a multidisciplinary care team for hypermobile Ehlers-Danlos syndrome (hEDS). Discover tips for vetting doctors, pacing, and daily coping.

Remember: you are the expert on your own body. This guide is here to empower you with the language and research you need to communicate effectively with your doctors.

Common questions in this guide

What is the hEDS, POTS, and MCAS trifecta?
The hEDS 'trifecta' refers to the common co-occurrence of Hypermobile Ehlers-Danlos Syndrome (hEDS), Postural Orthostatic Tachycardia Syndrome (POTS), and Mast Cell Activation Syndrome (MCAS). Patients frequently experience interconnected symptoms across all three conditions.
How do doctors diagnose hEDS?
hEDS is diagnosed clinically using the strict 2017 international diagnostic criteria, which includes evaluating joint flexibility with the Beighton score. Genetic testing is typically used to rule out other rare types of Ehlers-Danlos Syndrome or related connective tissue disorders.
How should I manage a flare-up of multiple hEDS symptoms at once?
During a multisystem flare-up, it is crucial to communicate with your care team according to your established plan. Pacing your energy and coordinating with your doctors can help you safely manage worsening symptoms across different body systems.
How can I prepare for appointments with a new hEDS doctor?
When seeing new doctors, it helps to organize your medical history, imaging, and test results into a single binder or folder. Bringing a supportive friend or family member to take notes can also help you advocate for yourself effectively.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.What is the best way for us to communicate if I experience a flare-up of multiple symptoms at once?
  2. 2.Can we schedule longer appointment times to ensure we cover all of my affected body systems without rushing?
  3. 3.Who in your office or network should I contact if I need documentation for work or school accommodations?

Questions For You

Tap a prompt to share your answer — we'll use it plus this page's context to start a tailored conversation.

This guide provides educational information about Hypermobile Ehlers-Danlos Syndrome (hEDS) and HSD. It is not a substitute for professional medical advice, diagnosis, or treatment from your physician.

Get notified when new evidence is published on Hypermobile Ehlers-Danlos Syndrome (hEDS).

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