Just a "zebra" trying my best to live life to the fullest with EDS and POTS...and loving the ride.

About EDS (Ehlers-Danlos Syndrome)

What is Ehlers-Danlos Syndrome?

According to the Ehlers-Danlos National Foundation,

“Individuals with EDS have a defect in their connective tissue, the tissue that provides support to many body parts such as the skin, muscles and ligaments. The fragile skin and unstable joints found in EDS are the result of faulty collagen. Collagen is a protein, which acts as a “glue” in the body, adding strength and elasticity to connective tissue.

Ehlers-Danlos syndrome (EDS) is a heterogeneous group of heritable connective tissue disorders, characterized by articular (joint) hypermobility, skin extensibility and tissue fragility. There are six major types of EDS. The different types of EDS are classified according to their manifestations of signs and symptoms.”

(http://www.ednf.org/index.php?option=com_content&task=view&id=1347&Itemid=88888968)

 

How Does EDS affect me?

I was diagnosed with type II EDS by two geneticists and one EDS specialist/Sports Medicine Doctor. Type II EDS basically means that I have extreme joint hypermobility, and mild skin involvement. The following are the body systems that are affected by my EDS…

  • Joint Pain, subluxations, dislocations~especially my back, neck, ribs, hips, and shoulders.
  •  Mouth~Jaw with TMJ and dislocations, and gum sensitivity.
  •  Gastrointestinal~I have slow gastric emptying, on and off gastroparesis, and IBS due to the stretchiness of the connective tissue in my GI tract.
  •  Skin~Stretchy and velvety skin, I bruise easily, and I have epicanthal folds.
  •  Autonomic Nervous System~Dysautonomia, specifically Postural Orthostatic Tachycardia Syndrome (POTS), due to the stretchiness of my blood vessels. Dysautonomia is a chronic disease of the Autonomic Nervous System.
  •  Chronic Fatigue, headaches, anxiety, and depression

At this time, the types of specialists I see to manage my EDS (and POTS) are:

  • Ehlers-Danlos Specialist
  • Cardiac Electrophysiologist
  • Sports Medicine/Orthopedist
  • Physical Therapist
  • Pain Management/Prolotherapy Specialist
  • GI Motility Specialist
  • Psychiatrist
  • Family Practice Physician
  • Gynecologist
  • Dentist

What was I tested for before my diagnoses?

  •  Multiple Sclerosis multiple times
  • ALS
  • Myasthenia Gravis
  • LEMS
  • Muscular Dystrophy
  • Mitochondrial Disease
  • Nutritional Deficiencies, Electrolyte Imbalances
  • Lyme Disease
  • Lupus
  • Churg-Strauss Vasculitis
  • Thyroid Diseases
  • Other various autoimmune diseases
  • Cancer
  • Celiac Disease
  • Every Stomach Disorder/Illness/Disease Imaginable

EDS Tweets

Je sais même pas s'il a déjà était dans le Top20 des joueurs au ballon d'or #EDS : emission pour faire plaisir aux "antiparigos" ! 2/2

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