Amanda
&
Ehlers-Danlos Syndrome type III

Ehlers-Danlos syndrome (EDS) type III (aka hypermobile Ehlers-Danlos syndrome/hEDS) is an inherited connective tissue disorder that is caused by defects in a protein called collagen. It is generally considered the most common type of EDS and least severe form of EDS, although significant complications can occur even with this type of EDS.Although hEDS is regarded as a genetic condition, the genetic cause is unknown at this time as the gene(s) responsible have not been identified. Inheritance is autosomal dominant.Many patients with hEDS struggle with being diagnosed correctly and can go years before they are diagnosed, if at all. Amanda was not diagnosed until March 6th, 2021 at the age of 36.

Common Symptoms in hEDS

Common symptoms include fatigue, anxiety, joint hypermobility, joint pain, partial joint dislocation (subluxation) or full joint dislocation, soft, smooth skin that may be slightly elastic (stretchy) and/or bruises easily, chronic musculoskeletal (muscle and bone) pain, muscle contracture, muscle spasticity, autonomic dysfunction/dysautonomia (may lose partial or full function to keep a stable blood pressure and/or pulse, sweating, waste elimination via urination and/or defecation, nausea and/or vomiting, gastrointestinal motility, and more).

Some Dangerous Comorbid Conditions that may be found in some hEDS Patients

  • Blood Clot

  • Brain Ischemia

  • Complete Vascular Compression

  • Heart Arrythmia

  • Organ Obstruction

  • Organ Rupture

  • Dangerously High or Low Blood Pressure

  • Dangerously High or Low Heart Rate

  • Seizure

  • Syringobulbia

  • Syringomyelia

  • Stroke

  • Vascular Rupture

Other Common Comorbid Conditions that may be found in some hEDS Patients

* ADHD and/or ASD (autism spectrum disorder)
* Adult GH Deficiency
* Aldosterone Paradox
* Anxiety and/or Depression
* Arthritis
* Autoimmune Disease
* Central Pain Sensitization Syndrome
* Chronic Fatigue Syndrome
* Chiari Malformation
* CRPS
* Craniocervical Instability
* Cranial Nerve Neuralgias
* CSF Leaks
* Dysphagia
* Dysautonomia
* Dystonic Movements
* Eagle Syndrome
* Electrolyte Imbalance
* Empty Sella Syndrome
* Endometriosis
* Fibromyalgia
* Gait Disorder
* Gastrointestinal Dysmotility
* Gastritis
* GERD
* Hernias
* Immunodeficiency
* Intercranial Hypertension or Intercranial Hypotension
* IBS
* Leaky Blood Brain Barrier
* Leaky Gut
* MCAS/MCAD (mast cell activation syndrome)
* Mitochondrial Dysfunction
* Menstrual Irregularity Vaginal Bleeding
* Multiple Allergies
* Multiple Chemical Sensitivity Syndrome
* MVP
* Neurogenic Bladder
* OSA
* Panhypopituitarism
* PCOS
* Pituitary Insufficiency
* POTS
* Restless Leg Syndrome
* Scoliosis and/or other Spinal disorders
* Sheehan-like Syndrome
* SIBO
* Syringomyelia
* Tethered Cord
* Vascular and/or Nerve Compressions (MALS, May Thurner Syndrome, SMA, Nutcracker Syndrome, TOS, and more).
* Visceroptosis

Looking for EDS Support Groups?

Below are links to some EDS Support Groups on Facebook!

Books and the EDS Society website that Amanda's specialists recommended to her for her hEDS, Dysautonomia, and more!

NOTE: Amanda is not a licensed or paid medical professional. All information on this website reflects what diagnoses and treatments Amanda has had or actively does have, as well as the information that was provided to her by other healthcare professionals. This website is for sharing purposes only. Amanda is not responsible for any decisions that other users make on this website or other websites.