AMANDA ROME

&

HEDS

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.In her childhood years Amanda experienced strange symptoms, and in her early 20s her health began to fail.For the first decade, Amanda only received a few diagnoses that many chronically ill people first get diagnosed with: anxiety, depression, irritable bowel syndrome, fibromyalgia, and chronic fatigue syndrome.Finally, at the age of 36, Amanda received her diagnosis of hEDS on March 10th, 2021. As a few years followed, she would then receive more diagnoses of comorbid conditions that plagued her, but thankfully she now has a small care team to assist her with her medical conditions.

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).

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).

DANGEROUS HEDS COMORBID CONDITIONS

  • 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

COMMON HEDS COMORBID CONDITIONS

  • ADHD and/or ASD (autism spectrum disorder)

  • Adult GH Deficiency

  • Aldosterone Paradox

  • Anxiety and/or Depression

  • Arthritis

  • Autoimmune Diseases

  • Central Pain Sensitization Syndrome

  • Chronic Fatigue Syndrome

  • Chiari Malformation

  • Chronic Regional Pain Syndrome

  • Craniocervical Instability

  • Cranial Nerve Neuralgias

  • CSF Leaks

  • Dysphagia

  • Dysautonomia

  • Dystonic Movements

  • Eagle Syndrome

  • Electrolyte Imbalance

  • Empty Sella Syndrome

  • Endometriosis

  • Fibromyalgia

  • Gait Disorder

  • Gastrointestinal Dysmotility

  • Gastroparesis

  • 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

  • Heart Valve Prolapsing and Regurgitation

  • Neurogenic Bladder

  • OSA

  • Panhypopituitarism

  • PCOS

  • Pituitary Insufficiency

  • POTS

  • Restless Leg Syndrome

  • Scoliosis and/or other Spinal disorders

  • Sheehan-like Syndrome

  • SIBO & SIFO

  • 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 & THE EDS SOCIETY WEBSITE

DISCLAIMER

Amanda Rome is not a medical professional and all information on this website is based on her personal medical, healthcare journey and experience. The information on this website is not meant to replace any healthcare professionals, diagnose, or treat others.