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

About EDS

Written by Sebass. Posted in Uncategorized

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 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

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