101. Department Of Pathology - CDL - Ehlers-Danlos Syndrome Information regarding laboratory testing for different EDS types. Also includes limited information on TenascinX Deficiency Syndrome, a recently discovered http://www.pathology.washington.edu/clinical/collagen/guidelines/ehlersdanlos.ph

Collagen Diagnostic Laboratory Back to Clinical Services Introduction References Guidelines for Laboratory Testing Osteogenesis Imperfecta Ehlers-Danlos Syndrome Ol vs. Non-accidental Injury Prenatal Diagnosis Sending a Sample Required Forms Sampling Procedures Shipping a Sample Charges and Billing CPT codes (updated as of 11/30/04) Guidelines for Laboratory Testing for EHLERS-DANLOS SYNDROME The CDL offers limited diagnostic testing for EDS. If your patient has clinical features of vascular EDS (EDS type IV) or arthrochalasia (EDS type VII), Collagen Screening Studies will identify the vast majority of affected individuals. (References: Pepin 2000, Byers 1997 ). The sensitivity of collagen screening is greater than 95%. Vascular EDS testing can also be completed by requesting COL3A1 Genomic DNA Sequencing from blood if it is not possible to collect a skin biopsy. The sensitivity of COL3A1 sequencing is expected to be similar or slightly better than collagen screening. If collagen screening studies are requested and the biochemical results are consistent with vascular EDS, cDNA sequencing will be initiated automatically to confirm the diagnosis. In these instances cDNA sequencing is completed on the segments of the COL3A1 cDNA suspected to house the mutation based on collagen testing. If your patient has a family history of vascular EDS confirmed by a COL3A1 mutation, DNA testing of blood for family members is available. Please alert our laboratory ahead of time when a sample is being sent.

102. DermIS / Main Menu / DOIA / Ehlers-Danlos Syndrome / Info information on the diagnosis ehlersdanlos syndrome If you are a patient with ehlers-danlos syndrome , please complete our; Website-Questionnaire http://dermis.multimedica.de/doia/diagnose.asp?zugr=d&lang=e&diagnr=756800&topic

103. Hypermobility Forum For People With Marfan, EDS This is a moderated discussion board for Hypermobility syndrome, Marfan, and ehlersdanlos. Includes personal experiences, traditional and alternative treatment, and pain. http://marge.com/hypermobility/

Welcome to Hypermobility Forum for people with Marfan, EDS Your browser does not support Frames. Therefore, navigation of Hypermobility Forum for people with Marfan, EDS will not be aided by having a menu present at all times. The following is the menu made available to those with a frame-compatible browser: Top (Index) Instructions Formatting Troubleshooting ... User Profile Administration (Requires Frames) Click Here to Start

104. The Hypermobility Syndrome Association - Hypermobility Syndrome, Bjhs, Beighton, HMSA serves people with Hypermobility syndrome, ehlersdanlos, and related joint disorders with information, referrals, message boards, and much more. http://www.hypermobility.org/

HMSA Membership Medical Information Pain and Hypermobility HMS Resources ... Fundraising To the HMSA web site. Who are we: The Hypermobility Syndrome Association (HMSA) is a charity run by and for people diagnosed with the Hypermobility Syndrome (HMS). What we do: The HMSA aims to provide support and information to those affected by the Syndrome and to promote knowledge and understanding within the medical community and the public at large. We hope to assist sufferers to come to terms with the HMS and the distress that it can cause. The severity of the effects of HMS varies with the individual: some have few symptoms others are severely affected. HMS is an 'invisible illness' and because of this we can look well to the outside world but are often in severe pain. Moreover the nature of hypermobile joints combined with frail tissues means that we are prone to injury when performing simple everyday tasks. This opens us to skepticism, particularly by those in the medical profession who know little about HMS. The pain, stress and frustration can lead to depression: thus depression can often be mistaken as the cause of the illness, not a result of it. We work closely with those in the medical community with a special interest in HMS. Through our newsletters we aim to provide members with updates on the developments and issues within the medical community. As patients we need as much current and useful information as is available.

105. Hypermobility Forum For People With Marfan, EDS This is a moderated discussion board for Hypermobility syndrome, Marfan, and ehlersdanlos. Includes personal experiences, traditional and alternative treatment, and pain management tips from fellow patients. http://www.marge.com/hypermobility/

Welcome to Hypermobility Forum for people with Marfan, EDS Your browser does not support Frames. Therefore, navigation of Hypermobility Forum for people with Marfan, EDS will not be aided by having a menu present at all times. The following is the menu made available to those with a frame-compatible browser: Top (Index) Instructions Formatting Troubleshooting ... User Profile Administration (Requires Frames) Click Here to Start

106. Association Française Des Syndromes D'Ehlers-Danlos (AFSED) Informations, soutien et mise en relation des familles. http://assoc.wanadoo.fr/ehlers.danlos/

Bonjour, Le site internet de l'AFSED a changé d'adresse ! Veuillez désormais utiliser l'adresse suivante pour le consulter : http://www.afsed.com

107. Arthritis - UW Medicine - Department Of Orthopaedics And Sports Medicine Ankylosing spondylitis Juvenile rheumatoid arthritis Systemic lupus Psoriatic arthropathy Reiter s syndrome Sjogren s syndrome http://www.orthop.washington.edu/uw/tabID__3370/Default.aspx

Home Site Map Contact Us Links ... Arthritis The Arthritis Source Our articles (listed to the left) feature information about managing arthritis, medications for arthritis, more than 20 types of arthritic conditions, and more. All articles were written or edited by our medical faculty . Some of them were developed with help from the Arthritis Foundation If you have specific questions about arthritis, you might want to search our site by typing in your question. On our search page , you can also search for a doctor or surgeon. The Department of Orthopaedics and Sports Medicine The UW Medicine Bone and Joint Surgery Center and the UW Medicine Eastside Specialty Center offer subspecialized surgical care for arthritis patients. UW surgeons provide the most current approaches for patients with arthritis affecting: The hips and knees The shoulders and elbows The neck and back The wrists and hands ... The feet and ankles UW Rheumatoid Arthritis Service The UW Medicine Bone and Joint Surgery Center at UWMC-Roosevelt offers a specialty program for rheumatoid arthritis. The

108. The Ehlers Danlos Syndrome Once thought to be a rare condition of the connective tissue the Ehlers Danlos syndrome is now believed to affect 1 in every 5000 people. http://ok.essortment.com/ehlersdanlossy_rgkq.htm

The Ehlers Danlos syndrome Once thought to be a rare condition of the connective tissue the Ehlers Danlos Syndrome is now believed to affect 1 in every 5,000 people. The Ehlers-Danlos Syndrome (EDS) is a group of genetic conditions that have resulted from defects in a collagen molecule which would normally give strength and adhesion to the body's tissues. In many cases the disorder affects the skin and it can become excessively extendible (stretchy), fragile and bruise easily. The joints are often affected with or without skin problems. The ligaments and tendons become extremely lax and this can often result in dislocations and the onset of early degenerative osteoarthritis. Also, the walls of the blood vessels, intestines, uterus and also the foetal membranes may be markedly fragile which can often have severe repercussions. The healing of both accidental and surgical wounds is frequently very poor leaving dramatic scarring. Other problems often include prolapse of the heart's mitral valve, aneurysms, hernias, and a range of orthopaedic and dental problems. The manner in which it affects patients in degree of severity is extremely unpredictable. Although Ehlers-Danlos Syndrome was once considered to be a fairly rare condition now it is believed to affect 1 in 5,000 people. It affects both men and women with no predisposition to race or ethnicity. The condition was named after the two doctors who first grouped the symptoms. Edvard Ehlers was a Danish physician specializing in dermatology and Henri-Alexandre Danlos was a doctor at the Hospital Tenon, Paris, France. Although it wasn't until 1936 that Frederich Parkes-Weber proposed that the name "Ehlers-Danlos Syndrome" be applied to the disorder the condition was well known before then. A Spanish sailor known as George Albes was infamous for being able to stretch the skin on his chest out to arm's length. He was even asked to attend a meeting of physicians at the Academy of Leyden to demonstrate his unusual ability.

109. Marfan Syndrome, Cincinnati Children's Hospital Medical Center Cincinnati Children s Marfan/Ehlers Danlos syndrome Clinic American Heart Association US National Library of Medicine National Marfan Foundation http://www.cincinnatichildrens.org/health/heart-encyclopedia/disease/syndrome/ma

Home Contact Us Site Map Go to Advanced Search ... Down Syndrome Marfan Syndrome Velo-Cardio-Facial Syndrome VACTERL or VATER Association Signs and Symptoms Cardiac-Related Diagnostic Methods ... Contact Us Heart-Related Syndromes Marfan Syndrome Manifestations, Causes, Diagnosis, Treatment, Prognosis Explanation Manifestations Causes Diagnosis ... Prognosis What is Marfan syndrome? The Marfan syndrome is a genetic disorder that affects the body's connective tissues, or the tissues in between the main cells of each organ of the body. All organs contain connective tissue and, hence, the manifestations of Marfan syndrome appear in many parts of the body, especially the skeletal system, the eyes, the heart and blood vessels and the lungs. The term "syndrome" refers to the collection of physical findings that occur together often enough to provide a recognizable pattern that allows the diagnosis to be made. It was first described in a six year old girl by the French pediatrician, Antoine Marfan, in 1896. Return to Top Manifestations of Marfan syndrome The heart is affected in nearly 80 percent of patients with this syndrome. The most important finding is enlargement or dilation of the aorta, the main blood vessel that carries blood to the body. This abnormality in connective tissue of the first few inches of the aorta allows the aorta to stretch sufficiently to cause tearing or rupture.

110. Marfan Syndrome / Ehlers Danlos Syndrome Clinic, Cincinnati Children's Hospital The Marfan / Ehlers Danlos syndrome Clinic at Cincinnati Children s Hospital Medical Center specializes in evaluating, diagnosing and managing infants, http://www.cincinnatichildrens.org/svc/alpha/m/marfan/

Home Contact Us Site Map Go to Advanced Search ... Hypertension Clinic Marfan / Ehlers Danlos Syndrome Clinic Fetal Cardiology Clinic Catheterization and Interventional Cardiology Cardiology Cardiothoracic Surgery ... Contact Us Outpatient Clinics Marfan / Ehlers Danlos Syndrome Clinic Additional Information Meet the Heart Center team Find out more in the Heart Center Encyclopedia The Marfan / Ehlers Danlos Syndrome Clinic at Cincinnati Children's Hospital Medical Center is a multidisciplinary clinic that specializes in the evaluation, diagnosis and management of infants, children and adults who are suspected as having Marfan Syndrome / Ehlers Danlos Syndrome connective tissue disorders. Many children and adults who are tall or who have joint abnormality do not necessarily have these syndromes, but because of the genetic implications and potential cardiovascular and other organ system complications associated with these syndromes, establishing an accurate diagnosis is critical for the proper management of these conditions. Each patient is evaluated by a medical geneticist, a genetic counselor and cardiologist at the time of their clinic appointment. A comprehensive family history and past medical history are obtained as well as an

111. Ehlers Danlos Syndrome National. 25 branches. Founded 1985. Emotional support and updated information to persons with Ehlers - Danlos http://my.webmd.com/hw/raising_a_family/shc29ehl.asp

var guid_source = ""; var guid_source_id = ""; //unused var encodedurl = ""; WebMD Today Home WebMD News Center XML News via RSS Member Services WebMD University My WebMD Find a Physician Medical Info Check Symptoms Medical Library Health Tools Clinical Trials ... Women, Men, Lifestyle Who We Are About WebMD Site Map Health Topics Symptoms ... Ehlers-Danlos National Foundation Ehlers Danlos Syndrome Ehlers-Danlos National Foundation National. 35 local groups. Founded 1985. Provides resources for Ehlers Danlos syndrome patients, families, and health care professionals. Mission is to disseminate accurate information, to provide network of support and communication, and to foster and support research. Online message boards for EDNF members. WRITE: Ehlers-Danlos Nat'l Fdn. 3200 Wilshire Blvd., Suite 1601, South Tower Los Angeles, CA 90010 CALL: 213-368-3800 FAX: 213-427-0057 E-MAIL: staff@ednf.org WEBSITE: http://www.ednf.org VERIFIED: 1/11/2005 The above information was "verified" as correct on the date at the end of each entry. Since American Self-Help Group Clearinghouse's database is extensive but staffing is limited and information for these organizations can change, it is not possible to keep every entry in American Self-Help Group Clearinghouse database completely current and accurate. Please check with the organizations listed for the most current information. For additional information on self-help groups, please visit the American Self-Help Group Clearinghouse web site at http://www.mentalhelp.net/selfhelp

112. Ehlers Danlos Syndrome Complete online version of The Encyclopaedia of Medical Imaging including text and images from The Encyclopaedia of Medical Imaging s eight book volumes http://www.amershamhealth.com/medcyclopaedia/medical/Volume III 1/EHLERS DANLOS

financial services our commitment our company Search Medcyclopaedia for: Search marked text (mark text before you click) Browse entry words starting with: A B C D ... amershamhealth.com Ehlers danlos syndrome, (Edward Ehlers, 18631937, Danish dermatologist and Henri Alexandre Danlos, 18441912, French dermatologist), the general name for a group of 11 syndromes involving abnormalities of connective tissue characterized by hyperelasticity and fragility of the skin, hyperlaxity of the joints and a bleeding diathesis . Other systems that may be involved are the eye and the gastrointestinal, bronchopulmonary, genitourinary and cardiovascular systems. These syndromes vary genetically and biochemically but share the same complex of clinical abnormalities. Type IV is the most serious form of the disease and carries a decreased life expectancy. The primary disorder is a defect in collagen synthesis. No primary bone abnormality has been identified. Molluscoid fibrous tumours composed of proliferating connective tissue and degenerated fat are found predominantly on the pressure points of the body. Patients also exhibit subcutaneous spherules of necrotic fat in the skin that may be related to subclinical trauma. The bleeding diathesis may result from abnormalities in the vessel walls and defects in the supporting perivascular tissues that cause failure of tamponade. Subcutaneous haematomas are also seen. The joint hypermobility makes it possible for patients to touch the thumb to the forearm, dorsiflex the fifth finger beyond 90, hyperextend the elbow beyond 10, and hyperextend the knee beyond 10 (

113. BrainTalk Communities - Ehlers Danlos Syndrome Reload this Page Ehlers Danlos syndrome Threads in Forum Ehlers Danlos syndrome, Forum Tools, Search this Forum http://brain.hastypastry.net/forums/forumdisplay.php?f=128

114. BrainTalk Communities - Ehlers Danlos Syndrome Online patient support groups for healthcare and neurology. http://brain.hastypastry.net/forums/archive/index.php/f-128.html

BrainTalk Communities Specific Neurological Conditions (A - L) PDA View Full Version : Ehlers Danlos Syndrome Useful Websites How do you deal with fatigue and work? teens with eds ... EDS anybody else?

115. The Ehlers Danlos Syndrome WebRing Linking organizations and groups in support of EDS worldwide! http://q.webring.com/hub?ring=theehlersdanloss

116. Ehlers Danlos National Foundation American nationwide support and information to those affected by EDS. Includes many articles, message boards, chat room, information for medical http://www.ednf.org/

Join EDNF Member Login Username Password In the Spotlight Join the EDNF for as little as $15 a Year Support the EDNF by Buying Flowers and Gifts at EDNF.FlowerPetal.com Find Your Local Group State Zip City Choose Why become a member? Access to the secure member-only area with message boards, chat and email Receive Loose Connections, a quarterly newsletter Support research Learn more Welcome to the Ehlers-Danlos National Foundation Knowledge Community Change EDNF Medical Reference Guide *** Now Available *** EDNF's latest information product, the 2005 Medical Reference Guide (MRG) is now available for distribution through EDNF Local Groups . Earlier this month, every EDNF Local Group received a pack that included 100 copies of the guide, policy and "how to" documents as well as an MRG distribution best practices guide, distilled from ideas presented at this year's conference in Los Angeles. The MRG exists to inform health care professionals on where to get Medical Information on the Ehlers-Danlos Syndromes (EDS.)

117. Dermatology Image Atlas: Dermatology Images DermAtlas a collection of 7752 images in dermatology. http://dermatlas.med.jhmi.edu/derm/indexDisplay.cfm?ImageID=1059883832

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