hEDS - The Ehlers Danlos Society

Overview

• hEDS affects individuals differently, and the symptoms listed may not affect everyone with hEDS.
• Information provided is not medical advice; consult healthcare professionals for personalized guidance.

Key Body Systems Affected by hEDS

Musculoskeletal System

• Joint Hypermobility: Greater joint range of motion; generalized across the body.
• Joint Instability: Bones aren't securely held, leading to subluxations, dislocations, and sprains.
• Joint and Muscle Pain: Chronic and acute pain due to injuries.
• Sprains and Strains: Involves ligaments and tendons, causing pain and swelling.
• Osteoarthritis: Occurs due to increased joint wear; may start younger in hEDS.
• Arm Span-to-Height Ratio: Some have an arm span greater than height (≥1.05).

Skin

• Skin Hyperextensibility: Skin stretches more than usual.
• Easy Bruising and Fragility: Susceptible to bruising and tearing.
• Poor Wound Healing: Wounds may heal slowly.
• Atrophic Scars and Stretch Marks: Sunken scars and indented streaks in skin.
• Resistance to Local Anesthetics: Less effective in some with hEDS.

Nervous System

• Dysautonomia: Affects autonomic processes; includes orthostatic hypotension and POTS.
• Reduced Proprioception: Decreased body position/movement awareness.
• Neuropathic Pain: Chronic nerve pain described as burning or tingling.
• Nerve Entrapment: Compression of nerves causing pain and numbness.
• Small Fiber Neuropathy: Damage to small nerve fibers.
• Idiopathic Intracranial Hypertension: Increased brain pressure causing headaches.
• Cerebrospinal Fluid Leaks: Causes unique headaches and other symptoms.
• Thoracic Outlet Syndrome: Compression in neck/chest causing numbness.

Spine

• Scoliosis & Kyphosis: Abnormal spine curves.
• Craniocervical & Atlantoaxial Instability: Increased movement in neck/spine joints.
• Chiari I Malformation: Brain bulge into spinal canal causing pressure and symptoms.
• Tethered Cord Syndrome: Restricted spinal cord movement.
• Degenerative Disc Disease: Wear on spinal discs.

Head

• Fatigue and Headaches: Various underlying causes.
• Lightheadedness: Often due to dysautonomia.
• Sleep Issues and Apnea: Problems with sleep initiation and maintenance.
• Anxiety, Depression, ADHD, and Autism: Commonly associated mental health issues.

Mouth and Throat

• High/Narrow Palate and Dental Crowding: Structural issues in mouth.
• Temporomandibular Joint Dysfunction: Issues with jaw joint.
• Voice and Swallowing Difficulties: Known as dysphonia and dysphagia.

Eyes

• Nearsightedness (Myopia): Difficulty seeing distant objects.

Cardiovascular System

• Tachycardia: Fast heart rate.
• Mitral Valve Prolapse: Floppy valve, usually mild.
• Aortic Root Dilation: Enlarged aorta section, typically mild.

Gastrointestinal System

• Dysmotility and GERD: Problems with food movement and acid reflux.
• Gastroparesis: Delayed gastric emptying.
• IBS, Nausea, and Bloating: Common GI symptoms.
• Hernias and Vascular Compression Syndromes: Structural abnormalities causing pain.

Pelvic Organs

• Voiding Dysfunction and Incontinence: Urinary issues.
• Prolapse and Dyspareunia: Structural support issues in pelvic organs.
• Menstrual Issues: Painful and heavy periods.

Immune System

• Mast Cell Activation Syndrome: Allergic symptoms due to overactive mast cells.

Hands and Feet

• Arachnodactyly: Long, slender fingers.
• Piezogenic Papules of the Heel: Fat bumps under pressure.

Pregnancy

• Symptom Changes: Worsening of pain, instability, GI issues, and more during pregnancy.
• Increased Bleeding and Fast Labor: Challenges during childbirth.