When you or a loved one is diagnosed with EDS there are many words that quickly become part of your vocabulary.

Whether it is you or a loved one, receiving a diagnosis of Ehlers-Danlos Syndrome (EDS) can be a stressful and frightening experience. Perhaps it was found in a child after several years of trying to determine what caused the painful cysts in his joints. Or in a 30 year old sister by an autopsy after her sudden death, when her only medical complaints were headaches, easy bruising and a shoulder that popped out of joint. Maybe it is you, after spending several years in chronic pain while x-rays and rheumatologists all say there is nothing to cause it. Whatever the reason, there is typically a prolonged period of stress involved.

The stress does not end upon diagnosis. Now you enter a world where little is known. You have to educate yourself in order to educate your doctors and coordinate your care. Even with educational groups such as the Ehlers-Danlos National Foundation, it is easy to get lost in the sea of medical terms. The following words and phrases are frequently encountered when learning about EDS.

Vocabulary

Articular: joints or related to joints

Atrophic Scars: scars that are thin, wrinkled and appear as a valley or hole in the skin

Autosomal: related to a non-sex chromosome

Beighton Scale: a score of five or more on this nine-point scale shows hypermobility

· One point for bending the fifth finger backward more than 90º without assistance

· One point for placing each thumb to the forearm

· One point for bending each elbow backward more than 10º

· One point for bending each knee backward more than 10º

· One point for placing palms on the floor with knees fully extended

Congenital: existing since birth

Collagen: the structural protein found in connective tissue

Connective Tissue: the material that holds different parts of the body together. Examples include cartilage, tendons, blood vessels and skin.

Cysts: a fluid-filled, non-cancerous lump

Degenerative Joint Disease: a form of arthritis caused by the chronic breakdown of cartilage in the joint

Dislocation: bone moved from its normal position within a joint

Extensibility (Extensible): the ability to stretch to extreme distances without breaking

Heritable: passed from parent to child

Hernias: caused when part of an organ pushes through an opening in the organ’s wall

Hypermobility: also referred to as double-jointed, it means excessive joint movement or flexibility

Hypotonia: lack of muscle tone

Mitral Valve Prolapse: a heart valve that does not completely block the backward flow of blood

Molluscoid Pseudo Tumors: benign fatty or fibrous growths found under scars

Musculoskeletal: muscles and bones and the relationship between the two

Osteopenia: decrease in bone density, but not low enough to be osteoporosis

Sclera: the white part of the eye

Scoliosis: curvature of the spine

Subluxation: a partial dislocation; the bones are moved out of alignment but the joint is still intact

Temporomandibular Joint: the hinge, or joint, between the skull and lower jaw

Varicose Veins: commonly found in the legs, these are swollen or enlarged blood vessels that appear twisted and bulging through the skin

References:

Ehlers-Danlos National Foundation

Network C.A.R.E.S., Inc.