hEDS - The Ehlers Danlos Society

Overview of hEDS

• hEDS stands for Hypermobile Ehlers-Danlos Syndrome.
• Affects individuals differently with variable symptoms.
• Always consult healthcare professionals for personalized medical guidance.

Signs and Symptoms by Body Part

Musculoskeletal System

• Joint Hypermobility: Greater range of motion in joints throughout the body.
• Joint Instability: Bones not securely in place, leading to subluxations, dislocations, sprains.
• Joint and Muscle Pain: Chronic and acute pain common.
• Sprains and Strains: Ligament and tendon injuries causing pain and muscle spasms.
• Osteoarthritis: Accelerated cartilage wear due to hypermobility.
• Arm Span-to-Height Ratio: Some individuals have a longer arm span than height.

Skin

• Hyperextensibility: Skin stretches beyond normal range.
• Easy Bruising: Common among individuals.
• Soft, Velvety Skin: Characteristic skin texture.
• Fragility and Poor Wound Healing: Prone to tearing and slow healing.
• Atrophic Scars and Stretch Marks: Common due to collagen issues.
• Resistance to Local Anesthetics: Reduced effectiveness of anesthetics.

Nervous System

• Dysautonomia: Affects autonomic nervous system, leading to heart rate, blood pressure, and gastrointestinal issues.
• Reduced Proprioception: Decreased body position sense, increasing injury risk.
• Neuropathic Pain: Chronic nerve pain with sensations of burning or tingling.
• Nerve Entrapment and Small Fiber Neuropathy: Nerve compression and damage.
• Intracranial Hypertension and CSF Leaks: Increased cranial pressure and cerebrospinal fluid issues.
• Thoracic Outlet Syndrome: Nerve/blood vessel compression causing pain and numbness.

Spine

• Scoliosis and Kyphosis: Abnormal spine curvatures.
• Craniocervical and Atlantoaxial Instability: Increased movement at spine joints leading to headaches and other symptoms.
• Chiari I Malformation: Brain protrusion causing coordination issues.
• Tethered Cord Syndrome: Spinal cord movement restriction.
• Degenerative Disc Disease: Disc wear over time causing pain.

Head

• Fatigue and Headaches: Chronic tiredness and multiple headache causes.
• Lightheadedness and Sleep Issues: Common symptoms related to dysautonomia.
• Mental Health: Anxiety, depression, and ADHD are prevalent.
• Autism Spectrum Disorder: Neurodevelopmental disorder presence.

Mouth and Throat

• High/Narrow Palate and Dental Crowding: Structural issues within the mouth.
• Temporomandibular Joint Dysfunction: Jaw joint issues resulting in pain.
• Voice and Swallowing Difficulties: Common among individuals.

Eyes

• Nearsightedness (Myopia): Difficulty seeing distant objects.

Cardiovascular System

• Tachycardia: Increased heart rate due to dysautonomia.
• Mitral Valve Prolapse and Aortic Root Dilation: Heart valve and artery issues.

Gastrointestinal System

• Dysmotility and GERD: Movement issues in the digestive system and acid reflux.
• Gastroparesis and IBS: Stomach emptying issues and abdominal pain.
• Other Issues: Nausea, bloating, constipation, diarrhea, hernias.

Pelvic Organs

• Voiding Dysfunction and Urinary Incontinence: Bladder control issues.
• Prolapse and Dyspareunia: Pelvic organ displacement and pain.
• Menstrual Issues: Painful, heavy, or prolonged periods.

Immune System

• Mast Cell Activation Syndrome (MCAS): Inflammation and allergic reactions due to increased mast cell activity.

Hands

• Arachnodactyly: Long and slender fingers.

Feet

• Piezogenic Papules of the Heel: Bumps under skin causing potential pain.

Pregnancy

• Symptom Changes: Worsening of symptoms during pregnancy.
• Increased Bleeding and Fast Labor: Complications related to tissue fragility and labor duration.

Note: This summary is for informational purposes and does not replace professional medical advice.