EDS

Ehlers Danlos Syndrome

Say that to anyone without an MD after their name and you're likely to get a puzzled look. It's not a disorder that makes headlines and I don't recall ever seeing someone driving around with Zebra print "support" ribbon on the back of their car.

Why Zebra? Because the EDNF (Ehlers Danlos National Foundation) motto is "when you hear hoof beats, think ZEBRA!" Most doctors are taught "when you hear hoof beats, think horse" or simply put - most of the time the answer is the most obvious not something obscure. Unfortunately, most doctors don't know much about EDS and it tends to go undiagnosed or misdiagnosed for long periods of time.

So what is EDS anyway? Well according to the EDNF website EDS is " a heterogeneous group of heritable connective tissue disorders, characterized by joint hypermobility, skin extensibility, tissue fragility, easy bruising of the skin and a bleeding tendency...The underlying features of all forms of EDS is a genetic alteration at the molecular level which causes abnormalities, defective connective tissue within the collagen itself. Collagen is a protein that acts like "glue", which holds the body together, and makes the connective tissue strong and provides elasticity. Each type has a different collagen abnormality, but all share, in varying degrees certain manifestations. "

For those of you who are now sitting there with that puzzled "huh?" look... it's a group of connective tissue (think muscles, tendons, ligaments and skin) disorders that lead to super flexible joints, stretchy/weak skin, bruising and bleeding amount a myriad of other symptoms which vary from type to type.

There are 6 major "types" of EDS. Classical, Hypermobility, Vascular, Kyphoscoliosis, Arthrochalasia, and Dermatosparaxis Types.

I've been diagnosed hypermobility type.

I have dislocating/subluxing: Jaw, Shoulders, Collar Bones, Wrists, Fingers, Hips,Knees, Ankles and toes.

I have some skin involvement: Scarring, poor wound healing, lots of petechiae, easy bruising, I get stretch marks like it's my job and have some really crazy reactions to adhesives like band-aids or medical tape.

So there's the 5 minute run down on EDS and my main problems caused by my EDS.

More to come shortly...