The miracle is not to fly in the air, or to walk on the water, but to walk on the earth.

~Chinese Proverb~

About Ehlers-Danlos syndrome

People with chronic physical illnesses not only face the symptoms of their disease daily, but also must manage the mental and emotional ramifications of having perpetual symptoms. This is true of people diagnosed with Ehlers-Danlos syndrome (EDS), an illness you may be unaware of. 

Most of us walk around assuming our ball joints will remain in their sockets, and that if our skin is cut it will heal adequately in a few days. Not all people can make these assumptions. If a person with EDS says, “My bones are rattling,” they mean it.  

EDS is a group of conditions that affect connective tissue in the body. It is an inherited disease that results in stretchy skin, fragile body tissue, and loose joints. Genetic alterations weaken or lower the body’s collagen supply, and collagen is a primary ingredient of our ligaments, tendons, bones, cartilage, skin, blood vessels, our spine, and the gut. 

Types of Ehlers-Danlos Syndrome 

Classical EDS: symptoms are velvety, stretchy, elastic, and fragile skin; loose and very flexible joints. 

Hypermobility EDS: symptoms are noticeably loose, flexible joints that can be painful, especially after exertion; the skin is less stretchy but bruises easily. This is the most common EDS type.

Vascular EDS: symptoms are weakened, fragile blood vessels that can easily burst, and transparent skin; this is the most severe type of EDS. 

Kyphoscoliotic EDS: the defining symptom is an extremely curved spine.

Arthrochalasia EDS: symptoms are fragile skin, short stature, and easily dislocated joints.

Dermatospraxis EDS: symptoms are wrinkly, doughy, extremely fragile skin that folds and sags; this form of EDS is more rare.

Periodontal EDS: the symptoms are similar to classical EDS, but the gums are particularly fragile. 

Living With the Symptoms 

The tendons, ligaments, and joint tissues in EDS patients are prone to tearing and over-stretching so their limbs may have inadequate support and be floppy. Those with vascular EDS are at constant risk of internal bleeding since their blood vessels, lung and lower intestine linings are easily torn. 

Loose or hyper-mobile joints may be highly unstable, dislocate easily, and possibly become disabling. Joints can be extremely painful and necessitate the continuous use of pain medications. Fragile EDS skin bruises easily, is prone to splitting, slow to heal, and may heal improperly leaving wide scars or papery skin.

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