Gourt > Health > Conditions and Diseases > Musculoskeletal Disorders > Connective Tissue > Ehlers Danlos Syndrome
Ehlers-Danlos syndrome is a group of rare genetic disorders caused by a defect in collagen synthesis. Depending on the individual mutation, the severity of the disease can vary from mild to life-threatening. There is no known cure. Treatment is supportive.
Symptoms
Common symptoms are unstable, flexible joints with a tendency to dislocate and subluxate, due to ligaments which are overly stretchable, and elastic, fragile, soft skin that easily forms welts and scars. "It was the recommendation of a workshop convened in Berlin by Beighton (1986) that the Ehlers-Danlos designation be used for joint hypermobility with skin changes" * in contrast to hypermobility syndromes without skin changes, once known as EDS type 11 (). Other symptoms can include eye problems and nearsightedness. Bone deformities such as pectus excavatum (sunken chest) or scoliosis may present early. Most serious are vascular and organ fragility, which are less frequent. More on [ Ehlers-Danlos syndrome ]
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RT @HannahSymmonds: I hope tonight's @MTVsMADE helps raise awareness of HMS and Ehlers-Danlos Syndrome!! Thank you for featuring! #invisibleillness #EDS #HMS
illuminatedLove (Katherine Gillette) Fri, 27 Jan 2012 13:33:26 -0000
RT @HannahSymmonds: I hope tonight's @MTVsMADE helps raise awareness of HMS and Ehlers-Danlos Syndrome!! Thank you for featuring! #invisibleillness #EDS #HMS
RT @HannahSymmonds: I hope tonight's @MTVsMADE helps raise awareness of HMS and Ehlers-Danlos Syndrome!! Thank you for featuring! #invisibleillness #EDS #HMS
inga_bee (ingrid bard) Fri, 27 Jan 2012 13:11:58 -0000
RT @HannahSymmonds: I hope tonight's @MTVsMADE helps raise awareness of HMS and Ehlers-Danlos Syndrome!! Thank you for featuring! #invisibleillness
Ehlers-Danlos National Foundation - American nation-wide support and information to those affected by EDS. Includes many articles, message boards, chat room, information for medical professionals, and regional support groups.
Meta Description: [ The Ehlers-Danlos National Foundation provides information about Ehlers-Danlos Syndrome and support to people with EDS and related disorders. ]
Fibromyalgia Support Site - Offers information support for ehlers-danlos syndrome, joint hypermobility, fibromyalgia, and several other related disorders.
Syndrome - Personal site of a patient with vascular type EDS. Moon relates how she was diagnosed after one hospital missed a double aneurism - fortunately a second hospital discerned the problem before it was too late! Pictures included.
American Massage Therapy Association - The Hypermobile Client/Therapist - Hypermobility can be a problem for both massage therapists and clients, AMTA discusses solutions therapists can readily employ.
Arthritis Foundation Disease Center: Ehlers-Danlos Syndrome - Symptoms, diagnosis and treatment of the condition.
Meta Description: [ Arthritis Foundation ]
Arthritis Insight-EDS Tips for Surgery - If you or a family member with EDS needs surgery, read this and share it with your doctor.
Meta Description: [ ArthritisInsight.com is a online guide to arthritis information featuring helpful Chats, message boards, and news to help you deal with the challenges of living with arthritis. ]
Coalition for Heritable Disorders of Connective Tissue - Research organization for genetic connective tissue disorders.
Department of Pathology - Information regarding laboratory testing for different EDS types. Also includes limited information on Tenascin-X Deficiency Syndrome, a recently discovered disorder that shares symptoms with EDS.
Meta Description: [ Information on the University of Washington and the Department of Patholgy. Includes informative description of breakdown of departments as well as employees. This site also includes galleries of various images in the field of pathology. ]
Diagnose-Me: Treatments: Prolotherapy - Some EDS patients have obtained excellent results with prolotherapy treatments.
Meta Description: [ The Analyst (TM) - Comprehensive Online Evaluations For Those Seeking Answers To Their Health Problems. Travel-Free Results, Now! ]
EDS Living - a Journal - Learn what it's like to live with EDS for this woman and her children by following her online journal.
EDS Today - The newsletter for, by, and about people with the condition. Includes featured articles, columns, and contact information for support groups worldwide.
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.
Meta Description: [ Ehlers Danlos Foundation of New Zealand, medical information, original articles and links to other international EDS organizations ]
Ehlers-Danlos Hope - A Syrian patient gives a personal plea for better medical support and research.
Ehlers-Danlos National Foundation - Michiana Branch - Support group for individuals and families from Michigan and Indiana who have the condition. Meetings are held in South Bend, Indiana. Includes schedule and maps.
Meta Description: [ Our group provides support for individuals and families from Michigan and Indiana with Ehlers-Danlos Syndrome (EDS), a genetic connective-tissue disorder. ]
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.
Meta Description: [ The Department of Orthopaedics is actively involved in quality patient care, teaching, and research concerning bone and joint problems. Special areas of expertise include foot and ankle, hand and microvascular, hip and knee, arthritis, sports medicine. ]
Ehlers-Danlos Syndrome Medical Information - Doctor-produced information on the different types of EDS, including Tenascin-X Deficiency; treatments, pregnancy considerations, and more.
Meta Description: [ Find out about Ehlers-Danlos syndromes, a group of genetic disorders that include symptoms such as loose joints, tissue weakness, easy bruising, and skin that stretches easily. There are seven types of Ehlers-Danlos syndromes: Classical type, Hypermobility type, Vascular type, Kyphoscoliosis type... ]
Ehlers-Danlos Syndrome Support Group - This site offers extensive information for patients and doctors, plus links.
Ehlers-Danlos Syndrome, Philadelphia Chapter - Local Philadelphia, PA support for EDS and connective tissue disorders, also offers a Service Guide for Invisible/Hidden Disabilities.
Electronic Textbook of Hand Surgery - Eaton Hand provides a glimpse inside the hand, wrist, and elbow. Discover how your joints are supposed to work, what goes wrong in dislocations, and how injuries and ailments are treated.
Meta Description: [ Electronic Textbook of Hand Surgery, Hand surgery information for surgeons, therapists and patients, covering anatomy, therapy, surgery, and recovery. There are many pictures of hand operations and literature about hand problems ]
HealthWise: Ehlers Danlos Syndrome - Expands on NORD's information about EDS, includes great detail on symptoms and cross-over of types.
Meta Description: [ Ehlers-Danlos syndrome (EDS) is a group of hereditary connective tissue disorders characterized by defects of the major structural protein in the body (collagen). Collagen, a tough, fibrous protein, plays an essential role in holding together, streng ]
Hypermobility Forum - This is a moderated discussion board for Hypermobility Syndrome, Marfan, and Ehlers-Danlos. Includes personal experiences, traditional and alternative treatment, and pain management tips from fellow patients.
Meta Description: [ This is a moderated discussion board based
on the Discus program. ]
Hypermobility Portal - Serves as a window to message boards, medical articles, support groups, and other resources for people with hypermobility disorders.
Meta Description: [ Objectis - Hébergement Zope et Plone gratuit / Free Zope and Plone hosting ]
New York / New Jersey Ehlers-Danlos and Hypermobility - Offers a support, message and discussion center for NY/NJ ehlers-danlos patients.
NORD: Ehlers-Danlos Syndrome - Information about EDS from the National Organization for Rare Disorders.
Meta Description: [ National Organization for Rare Disorders is dedicated to helping people with rare, orphan diseases. Rarediseases.org contains information on the prevention, treatment and cure of rare diseases. ]
Oral Manifestations of Ehlers-Danlos Syndrome - EDS causes many dental concerns that you, your dentist, and your medical team must be aware of. This excellent article covers the problems and solutions in detail.
Sandy Simmons' Connective Tissue Disorder Site - Explores environmental and nutritional links in healing connective tissue disorders (Ehlers-Danlos, HMS, Marfans, and others)
Meta Description: [ Reviews the role of diet, nutrition and other environmental factors in inherited connective tissue disorders. ]
The Canadian Ehlers-Danlos Association - Working together to provide assistance, support and resources for people living with this rare genetic disorder.
Meta Description: [ Through an educational and informational support network, CEDA is committed to the enhancement of the lives of all persons affected by Ehlers-Danlos Syndrome. ]
The Hypermobility Syndrome Association - HMSA serves people with Hypermobility Syndrome, Ehlers-Danlos, and related joint disorders with information, referrals, message boards, and much more.
Meta Description: [ The Hypermobility Syndrome is a UK registered charity run by patients for patients. We work closely with the medical profession and provide support and information for those affected by HMS., The Hypermobility Syndrome is a UK registered charity run by patients for patients. We work closely with ... ]
The Swedish Ehlers-Danlos Syndrome National Association - The purpose of the association is to support members, to inform them and their families, physicians, dentists, other nursing staff and the general public about EDS concerning symptoms and consequences. Find contact details and links.
Meta Description: [ Site for the Ehlers-Danlos Syndrome (EDS) National Association, Sweden. This site is dedicated to providing information for persons with EDS, physicians, dentists, physical therapists, occupational therapists, other nursing staff, and the general public. ]
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Voluntary Recall of Vioxx - Press release about the recall of Vioxx, a drug commonly used to treat EDS-related arthritis. If you have been taking this medication please contact your doctor immediately for instructions.
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