Amy's Journey with...

Hypermobile Ehlers-Danlos syndrome (hEDS) ~ Postural Orthostatic Tachycardia Syndrome (POTS) ~ Focal Impaired Awareness (Complex Partial) Seizures ~ Fibromyalgia ~ Chronic Myofascial Pain (CMP) ~ Polycystic Ovarian Syndrome (PCOS) ~ TMJ Dysfunction ~ Bipolar Disorder Type I Rapid Cycling ~ Migraines ~ Obsessive Compulsive Disorder ~ Keratosis Pilaris (KP) ~ Complex-Post-Traumatic Stress Disorder (C-PTSD) ~ Panic Disorder ~ Generalized Anxiety Disorder (GAD) ~ Social Anxiety Disorder (SAD) ~ Self-Harm ~ Painful Piezogenic Pedal Papules ~ Hashimoto's Thyroiditis ~ Irritable Bowel Syndrome (IBS) ~ Seasonal Affective Disorder (SAD) ~ Multiple Phobias ~ Chronic Headaches


Ehlers-Danlos Syndrome, Vascular Type (formerly type IV)

  • This type affects approximately 1 in 250,000 people. Signs and symptoms include:
  • One fourth of individuals experience a serious medical problem by age 20
  • 80% of individuals experience a serious medical problem by age 40
  • The median age of death is 48 years
  • Passed down as an  autosomal dominant gene 
  • 50% of passing down C-EDS to children
  • Estimated prevalence is guessed at 1 in 250,000
  • There is no way of knowing how many people are undiagnosed with EDS
  • V-EDS is most often diagnosed on autopsy


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