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Hypermobile EDS (hEDS)

Hypermobile Ehlers-Danlos Syndrome (hEDS) is the most common type of EDS and causes generalized joint hypermobility, joint instability and chronic pain. 

hEDS accounts for about 90% of EDS cases and is thought to affect about 1 in 3100 to 1 in 5000 individuals. 

Every individual with hEDS has a unique set of symptoms and co-morbidities that may occur with this diagnosis. 

hEDS is managed by treating the individual health issues that each person has. A multidisciplinary team of various healthcare professionals is often required provide optimal care for patients with hEDS.

What is the difference between hEDS and HSD 

Currently the difference between hEDS and G-HSD is determined by a set of diagnostic criteria that assess for generalized joint hypermobility, complications of joint hypermobility (such as pain) and features of connective tissue disease. The degree of connective tissue weakness is the primary differentiating factor between these two conditions. 

Both conditions present with symptomatic generalized joint hypermobility and musculoskeletal complications. Both conditions are often accompanied by multiple other health issues such as fatigue, headaches, anxiety, mental health disorders, autonomic dysfunction and gastrointestinal issues.

International research is ongoing to try to understand if hEDS and G-HSD are two entirely separate conditions with different underlying causes or are different presentations of the same underlying condition. 

Regardless of the underlying diagnosis of hEDS or G-HSD both conditions require the same level of treatment, validation and care.

Common Signs and Symptoms of hEDS/G-HSD

Hypermobile Joints 

  • Joints easily move beyond the normal range of motion

Chronic Pain 

  • Generalized muscle and joint pains

  • Constant stiffness and spasms

  • Easy injury from minimal trauma leading to pain 

Abdominal Pain and Functional Gut Disorders 

  • Digestive disorders, nausea, heartburn, abdominal cramps and alternating diarrhea and constipation

Fatigue and Poor Sleep 

  • Extreme tiredness

  • Difficulty maintaining day to day activities such as work due to fatigue 

  • Problems falling and staying asleep

Joint Dislocations and Subluxations 

  • Joint comes completely out of its socket requiring active manipulation to put back in place

  • Joint slides in and out of the socket often not requiring manual manipulation to put back in place

Low Blood Pressure and POTS

  • Chronically low blood pressure or drop in blood pressure when standing (orthostatic hypotension)

  • Dizziness and sudden increase in heart rate after standing up

  • Fainting 

Allergies and Mast Cell Activation Disorder

  • Frequent rashes and severe allergic reactions since birth

  • Skin flushing and asthma-like symptoms

Mental Health Concerns 

  • Anxiety

  • Depression

  • Panic disorders 

Poor Healing, Stretchy skin and Bruising 

  • Fragile skin that tears or bruises easily – especially over the forehead and shin

  • Large skin bruises with minimal trauma that take more than 3 to 4 weeks to heal

  • Slow and poor wound healing that results in wide flat/depressed scars

  • Severe skin scarring and presence of several lumps on the body

Migraines and Headaches 

  • Chronic recurrent headaches and migraines

  • Headaches that resolve after lying down

Weak Pelvic Floor 

  • Desperate need to pass urine and urge to frequently pass urine multiple times throughout the day

  • Sensation of incomplete bladder emptying and decreased urine flow

  • Pelvic pains

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