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.
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