LearnEDS.org
EDS/ Ehlers-Danlos Syndromes & HSD/ Hypermobility Spectrum Disorder
Providing Support & Resources about Connective Tissues Disorders:
What is EDS?
Connective tissue is the glue that holds your body together. Ehlers-Danlos syndromes are a group of inherited disorders that affect the body's connective tissue due to improper collagen formation. They are generally characterized by joint hypermobility (joints that stretch further than normal), skin hyperextensibility (skin that can be stretched further than normal), and tissue fragility.
There are several different types of EDS; however the most common are hypermobile, classical, and vascular. According to the Ehlers-Danlos Society, at this time, research statistics of the Ehlers-Danlos syndromes show the total prevalence as 1 in 2,500 to 1 in 5,000 people. Clinical experience suggests that Ehlers-Danlos syndrome may be more common. The conditions are known to affect both males and females of all racial and ethnic backgrounds.
Some individuals may be diagnosed with Hypermobility Spectrum Disorder (HSD) or Joint Hypermobility (JH) if they don't meet the full criteria for EDS; however the Ehlers Danlos Society has acknowledged that whatever the diagnosis, the problems equal in severity and require similar management, validation, and care.
Common Signs and Symptoms
(Run your mouse over each common sign/symptom to learn more.)
Pain is one of the most common symptoms and complaints of EDS patients. It is often chronic, early onset, and debilitating.
Pain
A dislocation is when a joint comes completely out of place. A subluxation is when a joint partially comes out of place. Both are extremely painful and cause damage to the joint over time.
Subluxations/Dislocations
People with EDS tend to have velvety skin and look much younger than their chronological age. Their skin is often fragile and tears easily.
Soft/Stretchy Skin
People with EDS often have unexplained bruises all over their bodies that last for long periods of time.
Easy Bruising
"Cigar Paper" Scarring
Abnormal Scarring/Poor Wound Healing
People with EDS often take a significantly longer amount of time for wounds to heal due to poor collagen formation. This weakened scar tissue leads to atrophic or "cigar paper" scarring.
Other associated disorders
People that have Ehlers Danlos Syndrome are often diagnosed with many other related disorders such as Chronic Fatigue Syndrome (CFS), Fibromyalgia, Dysautonomia, Postural Orthostatic Tachycardia Syndrome (POTS), Mast Cell Disorder (MCAD), Gastroparesis, Chiari Malformation (CM), or others. These related disorders are part of the reason it takes so long to get a proper diagnosis as so many of their symptoms often overlap with each other.