1. Ehlers-danlos Represents people who suffer from a group of rare, inherited disorders which mainly affect the skin and joints. With an overview of the disorder and selfhelp details. http://www.ehlers-danlos.org/

Ehlers-Danlos Support Group Support for the New Millenium EDS Search Page Welcome to the Ehlers-Danlos Syndrome UK Support Group You are Visitor No. Ehlers-Danlos Syndrome (EDS) is the name given to a group of heritable connective tissue disorders. EDS can affect the skin, ligaments, and internal organs. Review of the 2002 Conference PLEASE READ THIS Latest News - NEW FRAGILE LINKS Information Sheets ... View our message board Web address: www.ehlers-danlos.org Designed with Contact Information Telephone UK 01252 690 940 (please leave a message if asked - we will try to get back to you as soon as we can!) World +44 1252 690 940 (UK Office Hours ONLY please! Postal address: The Director Ehlers-Danlos Support Group. P. O. Box 335 FARNHAM Surrey. GU10 1XJ England Electronic mail General Information: info@ehlers-danlos.org Message Board View our message board MEDICAL ADVISORY PANEL Dr. F. M. Pope, Honorary Professor and Consultant in Medical Genetics, MD. FRCP. Mr. A. P. Barabas, MD. FRCS. Mr A. I. Attwood MBBS FRCS (Ed), D. Merrild. MD. MPH. Mr N. Burrows, MD MRCP

2. EDNF - Home Page Of The Ehlers-Danlos National Foundation EDNF Provides support and information to those affected by ehlers-danlos syndrome and their families.Category Health Conditions and Diseases ehlers-danlos syndrome...... Providing emotional support and the latest information to those affectedby ehlersdanlos syndrome and their families since 1985. March 14, 2003. http://www.ednf.org/

EDNF ~ Together we will find a brighter day ~. Ehlers-Danlos National Foundation You are Visitor since June 26th 2002 Navigation Member Login Join the EDNF Make a Donation On-line News ... Admin Login Ehlers-Danlos National Foundation Providing emotional support and the latest information to those affected by Ehlers-Danlos syndrome and their families since 1985 March 28, 2003 NEWS UPDATE What is EDS? What is the EDNF? Welcome to the ednf.org website. It has been designed to deliver the information you need as quickly and efficiently as possible. In line with the majority of requests for information, the site is broken into 4 main areas. If this is your first visit to the Ehlers-Danlos National Foundation Website, please take a minute to read the following The site is continually expanding and improving, if you have any comments, suggestions or ideas that you think would help, please let us know by e-mail at

3. Ehlers-Danlos Syndrome a CHORUS notecard document about ehlersdanlos syndrome ehlers-danlos syndrome. autosomal dominant. connective-tissue disorder http://chorus.rad.mcw.edu/doc/00134.html

CHORUS Collaborative Hypertext of Radiology Musculoskeletal system Feedback Search Ehlers-Danlos syndrome autosomal dominant connective-tissue disorder: hyperelasticity of skin, poor wound healing hyperextensibility of joints soft-tissue calcifications (spheroids) vascular lesions: aortic dissection aneurysms rarely: tortuous arch, ectatic pulmonary aa. tissue fragility ==> hematomas, aortic rupture after angio clinical types: gravis, mitis, benign hypermobile, ecchymotic, X-linked a/w ** medullary sponge kidney Charles E. Kahn, Jr., MD - 2 February 1995 Last updated 14 March 2001 Medical College of Wisconsin

4. Ehlers-Danlos Syndrome - About Ehlers-Danlos Syndrome A brief description of EDS and how it is inherited. Edited by Frederick Matsen III MD Chairman, Departmen Category Health Conditions and Diseases ehlers-danlos syndrome...... ehlersdanlos syndrome. Edited by Frederick A. Matsen, III, MD and Gregory C. Gardner,MD Last updated August 31, 2001 About ehlers-danlos syndrome. What is it? http://www.orthop.washington.edu/arthritis/types/ehlersdanlos/01

Home About Us Clinics Physicians ... Contact Us Table of contents About Ehlers-Danlos syndrome What is it? Incidence and risk factors Causes ... View article with questions External links Ehlers-Danlos National Foundation March of Dimes [Top] Ehlers-Danlos Syndrome Edited by Frederick A. Matsen, III, M.D. and Gregory C. Gardner, M.D. Last updated August 31, 2001 About Ehlers-Danlos syndrome What is it? Ehlers-Danlos syndrome (EDS) is a group of hereditary disorders that affects mainly the skin and joints, but other organs as well. EDS results in weakness and/or excessive flexibility of the connective tissues of the body. People with EDS are born without the ability to make certain components of the normal connective tissue of the body. Incidence and risk factors EDS is a relatively rare disorder, occurring in fewer than 1 in 20,000 people. The various forms of EDS are characterized by abnormalities in the chemical structure of the body's connective tissues (for example, skin, muscles, tendons and ligaments). As a result, skin may become fragile and joints unstable. This article is rated out of 5 stars (1477 ratings).

5. The Ehlers Danlos Foundation Of New Zealand Support for sufferers of the ehlersdanlos syndrome and related Hypermobility Syndrome and provides some information for the medical profession and general public. http://www.edfnz.org.nz

[ Home ] Contents Search Ehlers-Danlos Foundation of New Zealand The Ehlers Danlos Foundation of New Zealand began as a support group in May 1995 when it was believed there were only twelve families in the country with the condition. Of course this proved a remarkable underestimation of the number of people within New Zealand who actually have EDS. Also catering for people with Hypermobility Syndrome the group achieved charitable status in early 2000. The aim of the organization is to provide emotional support for sufferers of the Ehlers-Danlos Syndrome and HMS, their spouses and family members. Also to create awareness of these conditions by the distribution of information amongst the medical profession and general public. Therefore a newsletter "Loosely Speaking" is published three times a year. It contains both medical information on EDS and personal stories written by the members of the EDFNZ. Individuals with Ehlers-Danlos Syndrome can be affected differently with a variation in the severity and range of symptoms. Because they so often look "normal" it is often difficult to have the condition taken seriously by the medical profession and even within their circle of family and friends. Therefore it can also be an isolating condition and the general lack of awareness and understanding can lead to feelings of frustration, stress and depression. If you're interested in either making a donation or in joining the EDFNZ as a member or Friend of the Foundation please feel free to e-mail or write to the address below. For $10.00 NZ you will receive a copy of Loosely Speaking, the Foundation's newsletter, three times a year.

6. Ehlers Danlos, Syndrome : Sites Et Documents Francophones Le mot clé Ehlers Danlos, syndrome ehlersdanlos syndrome est présent au sein de plusieurs arborescences du http://www.chu-rouen.fr/ssf/pathol/ehlersdanlossyndrome.html

Ehlers Danlos, Syndrome Menu général CISMeF Voir aussi réticuline Arborescence(s) Ehlers Danlos, syndrome Ehlers-Danlos syndrome appareil cardiovasculaire, maladies hémopathies et maladies lymphatiques maladies et malformations congénitales, héréditaires et néonatales maladies peau et tissu conjonctif Position du mot-clé dans l' (les) arborescence(s) : Vous pouvez consulter toutes les ressources ou seulement les principales ou utiliser l' outil de recherche les recommandations les documents concernant l' enseignement les documents destinés aux patients Ou consulter ci-dessous une sélection des principales ressources : patient AFSED - Association Française des Syndromes d'Ehlers-Danlos ; langue : français ; format : html ; accès : gratuit ; non parrainé ; visité le : 27/02/2001]. mots clés : * Ehlers Danlos, syndrome type(s) : association patients 20 janvier 2003 courriel Menu général CISMeF Haut de page © CHU de Rouen . Toute utilisation partielle ou totale de ce document doit mentionner la source.

7. NORD - Ehlers-Danlos Syndrome EDS disease information from the National Organization for Rare Disorders. http://www.stepstn.com/cgi-win/nord.exe?proc=Redirect&type=rdb_sum&id=24

8. What Is EDS? EhlersDanlos National Foundation. What is ehlers-danlos syndrome? http://www.ednf.org/whatisit.php

EDNF ~ Together we will find a brighter day ~. Ehlers-Danlos National Foundation Navigation Member Login Join the EDNF Make a Donation On-line News ... Admin Login Ehlers-Danlos National Foundation What is Ehlers-Danlos Syndrome? Symptoms Types Nosology Prevalence ... Prognosis Individuals with EDS have a defect in their connective tissue, the tissue which provides support to many body parts such as the skin, muscles and ligaments. The fragile skin and unstable joints found in EDS are the result of faulty collagen. Collagen is a protein which acts as a "glue" in the body, adding strength and elasticity to connective tissue. Ehlers–Danlos syndrome (EDS) is a heterogeneous group of heritable connective tissue disorders, characterized by articular(joint) hypermobility, skin extensibility and tissue fragility.There are six major types of EDS. The different types of EDS are classified according to their manifestations of signs and symptoms.Each type of EDS is a distinct disorder that "runs true"in a family. This means that an individual with Vascular Type EDS will not have a child with Classical Type ED

9. Booklets2000 Please help us by taking these surveys and explain your experiences with Connective Tissue Disorders like ehlersdanlos syndrome, Marfan's Syndrome, Stickler Involved Syndrome, and Fibromyalgia. http://www.angelfire.com/il2/booklets2000/index.html

WHO HAS IT? Connective Tissue Disorders do not appear to favor one set of genes over another. People from every age, gender, race, religion, and hemisphere are candidates. DOES IT EFFECT YOUR LIFE? Can people with C.T.D. still contribute? You bet they can! with Connective Tissue Disorder. LIFE DOES GO ON . . . Focusing on the pace – not on the hurdles – makes life more worthwhile. There are ways to improve your condition: "Quality of Life" can always be improved! Medical breakthroughs, personal support systems, new medications and treatments, – appear on the scene every day. Review advice from others who share your symptoms. Share your thoughts and experiences. Find a good doctor in your area. Take Survey

10. EDS_Booklet ehlersdanlos syndrome Edited by Professor HA Bird. Mr P. Cuckow, Mr. M. HawthorneThis is a 30 page, A5, Illustrated Booklet on ehlers-danlos syndrome (EDS). http://www.ehlers-danlos.org/Publications/EDS_Booklet.htm

Ehlers-Danlos Support Group Support for the New Millenium EDS Search Page EHLERS-DANLOS SYNDROME: Edited by: Professor H.A. Bird Authors: - Professor P. Beighton, Prof. A. C. Bird, Prof. R. Grahame, Mr. A. P. Barabas, Dr. F. M. Pope, Dr. I.P. Hunter. Mr P. Cuckow, Mr. M. Hawthorne This is a 30 page, A5, Illustrated Booklet on Ehlers-Danlos Syndrome (EDS). It has 20 different Sections; these cover various aspects of EDS. At the beginning the sections cover an introduction to EDS, explain what exactly Collagen is, the different types of collagen and the abnormality in EDS as well as how EDS is diagnosed. The different Types of EDS are stated and also the Hereditary patterns for each one. Other Sections include: Skin Features; The Rheumatological Symptoms; Orthopaedic Complications; Vascular Complications; Gastrointestinal Complications; EDS and the Eye; Hearing Impairment; Pregnancy; The Urinary Tract; Complications of EDS in Childhood; The Dental Aspects; Is there a Cure? Treatment; Surgery in EDS; and Anaesthesia. Available from Ehlers-Danlos Support Group.

11. DermIS / Main Menu / DOIA / Ehlers-Danlos Syndrome / Images ehlersdanlos syndrome / images http://www.dermis.net/bilddb/diagnose/englisch/i756800.htm

HOME DOIA PeDOIA Skincancer ... DOIA Ehlers-Danlos Syndrome images images for the diagnosis 'Ehlers-Danlos Syndrome' sitesearch: DermIS - Dermatology Information System

12. Ehlers-Danlos Syndrome - Coping With EDS Previous, ehlersdanlos syndrome. Edited by Frederick A. Matsen, III, MD andGregory C. Gardner, MD Last updated December 7, 2001 Coping with EDS. Coping. http://www.orthop.washington.edu/arthritis/types/ehlersdanlos/05

Home About Us Clinics Physicians ... Contact Us Table of contents About Ehlers-Danlos syndrome Causes Symptoms and diagnosis Management and treatment ... View article with questions External links American Juvenile Arthritis Organization (AJAO) [Top] Ehlers-Danlos Syndrome Edited by Frederick A. Matsen, III, M.D. and Gregory C. Gardner, M.D. Last updated December 7, 2001 Coping with EDS Coping If you or your child has EDS, you know that it may present many challenges. Adults and children may initially react with feelings of fear, anger or depression. Children may also feel self-conscious about having the disorder. Try to remember that it often takes time to adjust to having a chronic (long-lasting) disorder, but that many people with Ehlers-Danlos syndrome are able to live full, relatively active lives. If you have EDS you might have concerns about managing pain , maintaining independence, financial strain or family worries. Discussing your problems and learning new ways to manage daily activities will help you cope more effectively. Your family may be one of your best sources of support. Discuss these issues with them, and ask for their support. It is important that parents discuss their child's symptoms with teachers, neighbors, relatives, baby-sitters and friends. They need to understand that cuts and bruises are common features of the Ehlers-Danlos syndromes, and not signs of child abuse. They also need to know about the following:

13. Michiana Branch Of The Ehlers-Danlos National Foundation Support group for individuals and families from Michigan and Indiana who have ehlersdanlos syndrome (EDS), a genetic connective-tissue disorder. Meetings are held in South Bend, Indiana. http://michianaednf.org

http://smackdabdesign.com/michianaednf/index.html http://smackdabdesign.com/michianaednf/index.html

14. Genetic/Metabolic - Ehlers-Danlos Syndrome Genetic/Metabolic Disorders. ehlersdanlos syndrome. Ehlers-Danlossyndromes (EDS) comprise a heterogenous group of connective tissue http://www.mc.vanderbilt.edu/peds/pidl/genetic/ehlers.htm

PIDL Home/ Contents Development Nutrition Acute Illness ... Psychosocial Genetic/Metabolic Disorders EHLERS-DANLOS SYNDROME Ehlers-Danlos syndromes (EDS) comprise a heterogenous group of connective tissue disorders that share, as fundamental features, alterations of the integrity of the supporting structures of the body and inheritance in a simple Mendelian fashion. The cardinal manifestations of EDS are hyperextensible skin, hypermobile joints, easy bruisability, and generalized fragility of various connective tissues. The spectrum of severity ranges from almost imperceptible findings to severe debilitating illness. EDS results from the molecular abnormality of the connective tissues, and the clinical and genetic heterogeneity are, in part, a reflection of an underlying biochemical heterogenity. Four varieties of EDS have this far been found to be due to different abnormalities in the biogenesis of the collagens. Joint hypermobility is a cardinal feature. Typically, joint hypermobility involves both large and small joints. Joint effusions may be relatively frequent and hemarthrosis may occur. Congenital club foot is also not uncommon.

15. MEDLINEplus: Ehlers-Danlos Syndrome Topics. ehlersdanlos syndrome. Contents Organizations. Search MEDLINEfor recent research articles on • ehlers-danlos syndrome. You http://www.nlm.nih.gov/medlineplus/ehlersdanlossyndrome.html

Skip navigation Other health topics: A B C D ... List of All Topics Ehlers-Danlos Syndrome Contents of this page: From the NIH General/Overviews Diagnosis/Symptoms Treatment ... Organizations Search MEDLINE for recent research articles on Ehlers-Danlos Syndrome You may also be interested in these MEDLINEplus related pages: Connective Tissue Disorders Skin Diseases (General) Bones, Joints and Muscles Genetics/Birth Defects From the National Institutes of Health Questions and Answers About Heritable Disorders of Connective Tissue (National Institute of Arthritis and Musculoskeletal and Skin Diseases) General/Overviews Ehlers-Danlos Syndrome (EDS) (Arthritis Foundation) What is Ehlers-Danlos Syndrome? (Ehlers-Danlos National Foundation) Diagnosis/Symptoms Ehlers-Danlos Syndrome: Symptoms and Diagnosis (University of Washington, Dept. of Orthopaedics and Sports Medicine) Disease Management Coping with EDS (University of Washington, Dept. of Orthopaedics and Sports Medicine) Treatment Ehlers-Danlos Syndrome: Management and Treatment (University of Washington, Dept. of Orthopaedics and Sports Medicine) Genetics Ehlers-Danlos Syndrome: Causes (University of Washington) Hereditary Patterns (Ehlers-Danlos National Foundation) Organizations Ehlers-Danlos National Foundation National Institute of Arthritis and Musculoskeletal and Skin Diseases Information from the Medical Encyclopedia: Ehlers-Danlos Syndrome Health services in North Carolina Other states coming - learn more The primary NIH organization for research on Ehlers-Danlos Syndrome

16. Hypermobility & Fibromyalgia Support Site Information about joint hypermobility (ehlersdanlos syndrome), fibromyalgia and chronic fatigue syndrome. http://anaiis.tripod.com/hmedfm/index.html

About This Site Hypermobility Syndrome Info Fibromyalgia Syndrome Info Ehlers-Danlos Syndrome Info ... Search this Site Welcome to the original Support Site for people with joint hypermobility and Fibromyalgia! This site is dedicated to providing information and support for people with both joint hypermobility (including Ehlers-Danlos and Benign Joint Hypermobility Syndromes, or any form of Hypermobility Syndrome) and Fibromyalgia or Chronic Fatigue Syndrome (aka Chronic Fatigue Immune Dysfunction Syndrome, or Myalgic Encephalopathy in the U.K. and Australia). It is the first of its kind and provides information on these conditions, and also links to many sites with much more detailed information. It's important to note that this is an amateur site, not an official local, national or international support or information group. Hopefully, however, small individual endeavours like this will pave the way for such official groups to emerge. In addition, the Hypermobility & Fibromyalgia Group (hm-ed-fm) is the only discussion/support group online for people with both of these conditions. All are welcome! Click on the "Support: Talk to Others" link in the navigation bar on the left to learn more about the mailing list, as well as the vibrant Webforum and Chat Room. Join The List!

17. MEDLINEplus Medical Encyclopedia: Ehlers-Danlos Syndrome ehlersdanlos syndrome. Causes, incidence, and risk factors. Ehlers-Danlossyndrome involves abnormal formation of connective tissue. http://www.nlm.nih.gov/medlineplus/ency/article/001468.htm

Skip navigation Medical Encyclopedia Other encyclopedia topics: A-Ag Ah-Ap Aq-Az B-Bk ... Z Ehlers-Danlos syndrome Contents of this page: Definition Causes, incidence, and risk factors Symptoms Signs and tests ... Prevention Definition An inherited disorder characterized by excessive looseness (laxity) of the joints, hyperelastic skin that is fragile and bruises easily, easily damaged blood vessels and rarely, rupture on internal organs. Causes, incidence, and risk factors Ehlers-Danlos syndrome involves abnormal formation of connective tissue. This condition, occurs in different forms, most of which result from defects in different genes. Symptoms range from mild to severe. Symptoms Joint dislocation or subluxation, including congenital Increased joint mobility, joints popping, early arthritis Double-jointedness, flat feet Easily damaged, bruised and stretchy skin Easy scarring and poor wound healing Premature rupture of membranes or births Very stretchy skin Visual difficulties Peg teeth Signs and tests Examination by the health care provider may show: Excess joint laxity and joint hypermobility Soft, thin or hyperextensible skin

18. Ehler Danlos Personal plea for help from a sufferer in Syria.Category Health Conditions and Diseases ehlers-danlos syndrome...... ehlersdanlos syndrome http//www.orthop.washington.edu/Bone%20and%20Joint%20Sources/ezzzzzzz1_1.html.ehlers-danlos syndrome Menu http://ehler.8m.com/

Free Web site hosting - Freeservers.com Ehler-Danlos Syndrome Hopes T o whom it may concern: I am sending this messages to all physicians and researchers in the medicine world, where there is still a lot diseases with no medicine.. I send this message to every human all over the world, I don’t care about place, all what I care about is reading somebody who can help me and give me some hope. I didn’t find in my country any treatment, even any concern, because my disease is rare. As I’ve been told by some doctors, I am the only with this disease in Syria. I tried some contacts in the U.S. and France but with no result. Let me introduce my self : My name is Rawaa Tawileh (a Girl) born in Damascus, Syria in 20/5/1976, I have a disease named (Ehlar-Danlos). The disease was discovered when I was 14 months old, the of this disease are: - Fragile tissues, which are not able to get any beat because it will be damaged directly resulting in a wound of 1-3 cm according to the beat and the way the people surrounding deal with it. The wound is like the fish mouth, and it get bigger and bigger with time , and results a very ugly scar.

19. Family Village -- Ehlers-Danlos Syndrome Library E F. ehlers-danlos syndrome. Learn More About It. Ehlers-DanlosSyndrome From the National Organization for Rare Disorders (NORD). http://www.familyvillage.wisc.edu/lib_e-ds.htm

Ehlers-Danlos Syndrome Who to Contact Where to Go to Chat with Others Learn More About It Web Sites ... Search AltaVista for "Ehlers-Danlos Syndrome" Who to Contact Ehlers-Danlos National Foundation (EDNF) 6399 Wilshire Boulevard, Suite 510 Los Angeles, CA 90048 Fax: (213) 651-1366 E-mail: loosejoint@aol.com Website: http://www.ednf.org/ This organization seeks to provide emotional support and updated information to those affected by Ehlers-Danlos syndrome and to their family members. In addition, EDNF serves as a vital information link to and from the medical community. It desires to inspire and support research in the field of connective tissue disorders specifically Ehlers-Danlos syndrome. The Foundation publishes a quarterly newsletter, Loose Connections, which provides current information on medical advances in EDS, as well as a means to share in the everyday experiences of living with EDS. In addition, a computerized database is maintained which allows interested members to communicate with one another. Local Branches and support groups are forming throughout the U.S. These local branches enable members to meet and network with others affected by EDS, thus decreasing the feeling of isolation so many of us know all so well. Learning conferences are held in various locations throughout the country in an effort to allow patients, family members and medical professionals the opportunity to share information about EDS. Australian Ehlers-Danlos Syndrome (EDS) Support Group Australia

20. Arlene Brandeis, Opera Anthology Project Editor An expression of the loss of family members to genetic anomalies including ehlersdanlos syndrome, Acute Intermittent Porphyria, and Hypolipoproteinemia. Information provided about each. http://www.arlenebrandeis.com

Home Book Introduction Sample Story ... Editor 2001 Lyric Opera Of Chicago Production of Vincenzo Bellini's I Capuleti e i Montecchi Act I, Scene III With Andrea Rost (Giulietta), Vesselina Kasarova (Romeo), Umberto Chiummo (Lorenzo), Jeffrey Wells (Capellio), and Fabio Sartori (Tebaldo) Photo by Robert Kusel ANNOUNCING The Opera Anthology Project ATTENZIONE All Opera Professionals Please share your favorite: On Stage, Back Stage , Off Stage Story in our forthcoming Opera Anthology Publication BEHIND THE OPERA CURTAIN: An Opera Anthology We all have a favorite, funny, touching, and/or interesting story, please share yours. Stories from Opera Superstars to Opera Supernumeraries, Talent from Musical, Artistic, Technical, Production, and Administrative departments will share their experiences. The Who's Who of the Opera World will be represented. Don't exclude yourself or your opera company. Please limit each submission to 1,000 words or less. Story-related photographs are welcomed.

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