Ehlers-Danlos Syndromes

Ehlers-Danlos Syndromes (EDS)

Ehlers-Danlos Syndromes (EDS) are a group of 13 inherited conditions which are mostly considered rare that affect connective tissue. The most common type hypermobile EDS represents 90% of those diagnosed.

Connective tissues provide support in skin, tendons, ligaments, blood vessels, internal organs and bones.

There are several types of EDS that may share some symptoms.

These include:

  • an increased range of joint movement (joint hypermobility)
  • stretchy skin
  • fragile skin that breaks or bruises easily

The different types of EDS are caused by faults in certain genes that make connective tissue weaker.

EDS can affect people in different ways. For some, the condition is relatively mild, while for others their symptoms can be disabling. Some of the rare, severe types can be life threatening. For more information, Wiley On-Line Library has open access journals that provide great information and education. These Journal Articles are available here.

Please see the related conditions below.

Hypermobile EDS (hEDS)

90% of persons living with EDS have hEDS. With hEDS may have:

  • joint hypermobility
  • loose, unstable joints that dislocate easily
  • joint pain and clicking joints
  • extreme tiredness (fatigue)
  • skin that bruises easily
  • digestive problems, such as heartburn and constipation
  • dizziness and an increased heart rate after standing up
  • problems with internal organs, such as mitral valve prolapse or organ prolapse
  • problems with bladder control (stress incontinence)

Currently, there are no tests to confirm whether someone has hEDS.

The diagnosis is made based on a person’s medical history and a physical examination.

Diagnostic checklist for doctors across all disciplines to diagnose EDS.

For support or further information, consider booking a Wellness Session.

Many Related Conditions Associated With hEDS/HSD

There are multiple related conditions associated with hEDS/HSD. We encourage individuals and their primary care practitioners to consider printing off a copy of this list and highlighting the conditions that you have been diagnosed with for the conversation if you have either hEDS/HSD. Please also remember that even in identical twins, symptoms can present differently and in severity in families. To print a copy click here.

Allergic diseases

  • Food allergies
  • Mast Cell diseases
  • Sjogren’s Syndrome

Cardiovascular

  • POTS: Postural Orthostatic
  • Tachycardia
  • Mitrovalve prolapse
  • Aortic root dilation
  • Dysautonomia

Dermatologic

  • Rashes
  • Poor wound healing

Fatigue

  • Chronic fatigue syndrome
  • 38%
  • Exercise intolerance
  • Postexercise malaise (PEM)

Gastrointestinal

  • Abdominal: pain (< half)
  • Celiac disease (5-16%)
  • Constipation
  • Crohn’s disease
  • Dysmotility
  • Dysphagia
  • Eosinophilic esophagitis
  • Functional dyspepsia
  • Gastrointestinal reflux disease
  • Gastroparesis
  • Hiatal hernia
  • Irritable bowel syndrome
  • Pelvic floor disorders
  • Pelvic organ prolapse
  • Nausea

Gynecologic / Men’s Health

  • Pelvic pain
  • Dysmenorrhea
  • Urinary stress and/or urge incontinence
  • Neurogenic bladder

Hematological

  • Thrombocytopenia
  • Thromboembolism
  • Mastocytosis
  • Mast Cell Activation Syndrome

Musculoskeletal

  • Temporomandibular joint disorders
  • Compression disorders
  • Osteopenia/osteoporosis
  • Osteoarthritis
  • Fibromyalgia-40%
  • Pain – 100%

Neurodivergence

  • Autism
  • ADHD
  • Tic disorder

Neurological

  • Migraine headache
  • Tension-type headache
  • Dystonia
  • Decreased school performance
  • Brain fog/cognitive difficulties
  • Low mood
  • Difficulty concentrating
  • Memory problems
  • Somatization
  • Neurogenic bladder
  • Atlanto-axial instability
  • Chiari malformation
  • Craniocervical instability
  • CSF disorders (shunts)

Ophthalmology

  • Retina detachment

Otolaryngology

  • Swallowing disorder

Psychiatric

  • Anxiety
  • Depression
  • Insomnia
  • Eating disorders

And many more as research continues.

Get Involved

EDS Canada Foundation was established to help those living with Ehlers-Danlos Syndromes and related conditions, including Chronic Pain. Please contact us to learn more.

Get In Touch