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Ehlers-Danlos syndrome (EDS) is a group of inherited disorders that weaken connective tissues. Connective tissues are proteins that support skin, bones, blood vessels and other organs.
EDS usually affects your skin, joints and blood vessel walls. Symptoms include
There are several types of EDS. They can range from mild to life-threatening. About 1 in 5,000 people has EDS. There is no cure. Treatment involves managing symptoms. It also includes learning how to protect your joints and prevent injuries.
'''Ehlers-Danlos syndrome''' is a group of rare genetic disorder that diminish the body's ability to make connective tissues. It is caused by the inability of the body to synthesize different collagen types or a defect in synthesis. Depending on the individual mutation, the severity of the disease can vary from extremely mild to life-threatening. Typical symptoms are unstable, flexible joints including double-jointedness and tendency to dislocate, and elastic, fragile, soft skin that easily forms welts and scars. Other symptoms can include eye problems and nearsightedness. Bone deformations such as pectus excavatum (sunken chest) from extra-rapid bone growth may present early. Six different variants of the disease are known. EDS type 3 is the most common variant, and is caused by the autosomal dominant mechanism. EDS type 4 is also an autosomal dominant defect in the type 3 collagen synthesis. EDS type 6 is an autosomal recessive defect due to deficiency of an enzyme called lysyl hydroxylase. Among the more serious symptoms can be mitral valve prolapse, which creates an increased risk for surgery and anaesthesia, as well as itself possibly leading to further, dangerous complications. It may be linked to chronic fatigue syndrome, fibromyalgia, and myalgic encephalomyelitis. Other symptoms or complications can include fragile skin, bruising easily, early onset osteoarthritis (often severe), increased likelihood of organ membranes or arterial membranes rupturing, gum disease, and a long and varied list of things that degrade quality of life or threaten life. There is no known cure.
Survey for Connective Tissue Disorders - Please help us by taking these surveys and explain your experiences with Connective Tissue Disorders like: Ehlers-Danlos Syndrome, Marfan's Syndrome, Stickler Involved Syndrome, and Fibromyalgia.
Hypermobility and Fibromyalgia - Information about joint hypermobility (Ehlers-Danlos Syndrome), fibromyalgia and chronic fatigue syndrome.
Hypermobility Forum - This is a moderated discussion board for Hypermobility Syndrome, Marfan, and Ehlers-Danlos. Includes personal experiences, traditional and alternative treatment, and pain.
Ehlers-Danlos Syndrome Support Group - This site offers extensive information for patients and doctors, plus links.
Ehlers Danlos Foundation of New Zealand - Support for sufferers of the Ehlers-Danlos Syndrome and related Hypermobility Syndrome and provides some information for the medical profession and general public.
Ehlers-Danlos Syndrome Information - A series of short articles regarding genetics, diagnosis, treatment, and coping for people with EDS from the University of Washington's Orthopedics and Sports Medicine Department.
NORD: Ehlers-Danlos Syndrome - Information about EDS from the National Organization for Rare Disorders.
Ehlers-Danlos Syndrome, Philadelphia Chapter - Local Philadelphia, PA support for EDS and connective tissue disorders, also offers a Service Guide for Invisible/Hidden Disabilities.
The Hypermobility Syndrome Association - HMSA serves people with Hypermobility Syndrome, Ehlers-Danlos, and related joint disorders with information, referrals, message boards, and much more.
Arthritis Foundation Disease Center: Ehlers-Danlos Syndrome - Symptoms, diagnosis and treatment of the condition.