61. :14(5):Letter's Reply To the Editor The proteus syndrome offered by Dr. Denis Viljoen as a descriptionfor the case reported by me and Dr. Sulimani in the Annals of Saudi Medicine http://www.kfshrc.edu.sa/annals/145/reply.html

September 1994 Reply To the Editor: The Proteus syndrome offered by Dr. Denis Viljoen as a description for the case reported by me and Dr. Sulimani in the Annals of Saudi Medicine, 1993;13:194-6 might be one syndrome to explain the combination of the localized overgrowth and cutaneous hemangiomata, but after reviewing the literature, I feel that our case does not fully satisfy the criteria for the Proteus syndrome, which has various components that do not have to all be present in one patient. A few of them were found constantly in most of the reported cases; namely, the hemihypertrophy, the pigmented nevi, and the subcutaneous lipomata. Not all of these features were present in our case. A syndrome does not necessarily present itself completely all of the time but the multiplicity of the symptoms overlapping between some of the congenital hamartomatous disorders can make categorizing quite difficult in the individual case. The minimal diagnostic criteria for the Proteus syndrome that would separate it from other syndromes have not yet been clearly stated. Most of the documented cases are severely affected. I believe that until further clarification of the diagnostic criteria for the Proteus syndrome are offered, our case does not yet satisfy the description of such a syndrome. Mona Fouda, MRCP(UK)

62. Orthoguide.com Proteus Syndrome Search results for proteus syndrome . NO MATCHES FOUNDPlease select a differentkeyword or category OR Search AltaVista for 'proteus syndrome'. http://www.orthoguide.com/ortho/Proteus_Syndrome.php3

Search results for "Proteus Syndrome" NO MATCHES FOUND-Please select a different keyword or category OR Search AltaVista for 'Proteus Syndrome' Global Search Add Url Free Medline ... Search Enter Keywords to Search and Your Choice of Search Arguments Or And Match entire phrase Orthoguide.com

63. LINKS A web site about Nicolaia, who has KlippelTrenaunay Syndrome; The proteus syndromeSupport Group is a support group for those with the diagnosis of Proteus http://www.k-t.org/links.html

Search our Site: sitemap Quick Reference to Links: Understanding Klippel-Trenaunay Syndrome About The K-T Support Group K-T In The News Related Links On The Web ... Supplies Understanding Klippel-Trenaunay Syndrome Click here to access Information about Klippel-Trenaunay Syndrome Click here to read a reprint of a summary chapter about Klippel-Trenaunay Syndrome by Dr. David Driscoll, Professor of Pediatric Cardiology, Mayo Clinic, Rochester, MN. The following links will provide you with much added information about Klippel-Trenaunay Syndrome. Please take the time to "click" on these valuable sources of information. To return to this page from any link, click at the bottom of the page or click on the "back" button or arrow on your internet program. For information on relevant medical terminology , follow this link. Click here to read the latest review article about Klippel-Trenaunay Syndrome, "Klippel-Trenaunay Syndrome: Spectrum and Management," published in the Mayo Clinic Proceedings, January, 1998. Click here to access MedLine where you may search for articles in the medical literature dealing with Klippel-Trenaunay. Enter "klippel trenaunay" in the Search box and follow the instructions. You will access some of the articles in the bibiography indicated below, as well as more recent articles.You can print out some or all of the list and then contact a medical library (such as a University Hospital might have) to request a copy of the articles you wish to locate. (They may request a fee to copy the article.)

64. Proteusvnr09-04 THE CLINICAL NAME FOR IT IS proteus syndrome A CONDITION THAT CAUSES PARTSOF THE BODY - LIKE THE HEAD OR HANDS - TO GROW EXTREMELY LARGE. http://www.jamesline.com/output/proteusvnr09-04.htm

GENETIC LINK FOUND IN "ELEPHANT MAN DISEASE" For the first time researcher pinpoints genetic flaw leading to disease The James Cancer Hospital September 2001 STILL TO COME... RESEARCHERS UNCOVER GENETIC CLUES TO A DISEASE THAT HAS PUZZLED THEM FOR MORE THAN A CENTURY, UNRAVELING THE MYSTERY OF ELEPHANT MAN DISEASE, NEXT. EVEN THOUGH THERE ARE VERY FEW DOCUMENTED CASES OF IT, NEARLY EVERYONE HAS HEARD OF THE SO-CALLED "ELEPHANT MAN DISEASE". THE CLINICAL NAME FOR IT IS PROTEUS SYNDROME - A CONDITION THAT CAUSES PARTS OF THE BODY - LIKE THE HEAD OR HANDS - TO GROW EXTREMELY LARGE. UNTIL NOW PROTEUS SYNDROME BAFFLED SCIENTISTS. BUT AS CLARK POWELL SHOWS US, RESEARCHERS MAY FINALLY HAVE UNCOVERED SOME ANSWERS. WITH FEWER THAN 100 CASES CURRENTLY DOCUMENTED WORLDWIDE*, PROTEUS SYNDROME IS A RARE DISEASE. BUT HAS BEEN A POPULAR SUBJECT WITH WRITERS AND FILM MAKERS. MOVIES LIKE "THE ELEPHANT MAN" AND "MASK" PUT A NAME AND A FACE ON THIS PERPLEXING DISEASE, ONE THAT CAN BE SUBTLE AT THE START BUT PRODUCES SYMPTOMS THAT ARE ANYTHING BUT. "Sometimes it's so vague that even the astute clinician can't tell. And then suddenly it explodes in a progressive fashion and it is always progressive," Dr. Charis Eng said.

65. Online And Offline Support: P proteus syndrome. The proteus syndrome Foundation of UK People servedIndividuals and families dealing with proteus syndrome; Services http://www.widesmiles.org/support/p.html

P Pallister-Hall Syndrome Pallister-Hall Foundation People served: Families dealing with Pallister-Hall Syndrome Services provided: Information and referral, networking, and printed materials Address: RFD Box, 3000 Fairground Road, Bradford VT 05033 Pallister-Killian Syndrome Pallister-Killian Family Support Group People served: Individuals and families dealing with Pallister-Killian Syndrome and related syndromes Services provided: Information and support Address: 3700 Wyndale Court, Fort Worth TX 76109 Phone number: (817) 927-8854 Parry-Romberg Syndrome/Romberg Syndrome The Rombergs Connection and The Romberg's Connection Annex People served: Individuals dealing with Rombergs Syndrome Services provided: Information and support Email address: rombergs@hotmail.com Main Website: http://www.geocities.com/HotSprings/1018/ Annex Website: http://www.geocities.com/HotSprings/Spa/4818/ Pituitary Disorders Please note: Pituitary disorders can occur with craniofacial conditions. Pituitary Tumor Network Association Network People served: Individuals and families dealing with pituitary tumors or other disorders of the pituitary gland Services: Offline: Information and referral, resource guide, news on diagnosis and treatment, and support

66. Health Library - Proteus Syndrome Advanced Search. proteus syndrome. Self Help Clearinghouse. ProteusSyndrome Foundation. International network. Founded http://www.stjudemedicalcenter.org/Library/HealthGuide/SelfHelp/topic.asp?hwid=s

67. 19th Century Medical Curios/Elephant Man HomePages This disorder, named proteus syndrome, has been recorded in fewer than100 cases, ever. Several years ago a US National Institutes http://www.zoraskingdom.freeserve.co.uk/elwrong.htm

Whats wrong with him? The Elephant Man was not the Elephant Man. Source 'Fortean Times' magazine Links for Info on Neurofibromatosis Neurofibromatosis index NF Chat Line National NF Foundation ... Proteus Syndrome 2 Site and graphics constructed and designed by Pete (PeetFeet) Marsden. Contact me at peetfeet@geocities.com

68. Searchalot Directory For Proteus Syndrome Related Web Sites. proteus syndrome Foundation Support and educationfor families and professionals. Includes abstracts, brochures http://www.searchalot.com/Top/Health/ConditionsandDiseases/GeneticDisorders/Prot

Home Search News Email Greetings Weather ... Global All the Internet About AltaVista AOL Search Ask Jeeves BBC Search BBC News Business Dictionary Discovery Health Dogpile CheckDomain CNN Corbis eBay Education World Employment Encyclopedia Encarta Excite Fast Search FindLaw FirstGov Google Google Groups Infomine iWon Librarians Index Looksmart Lycos Metacrawler Microsoft Northern Light Open Directory SearchEdu SearchGov Shareware Teoma Thesaurus Thunderstone WayBackMachine Webshots WiseNut Yahoo! Yahoo! Auctions Yahoo! News Yahooligans Zeal Sponsored Links Top Health Conditions and Diseases Genetic Disorders : Proteus Syndrome Related Web Sites Proteus Syndrome Foundation - Support and education for families and professionals. Includes abstracts, brochures, glossary, links and newsletters. The CaF Directory - A definition of Proteus syndrome, its inheritance pattern, pre-natal diagnosis and a support group. NORD - Proteus Syndrome - Offers synonyms, a general discussion and further resources. Proteus Syndrome - From Readers Digest Health some general information and alternate names as well as further resources. Related Categories Health: Conditions and Diseases: Rare Disorders All the Internet About AltaVista AOL Search Ask Jeeves BBC Search BBC News Business Dictionary Discovery Health Dogpile CheckDomain CNN Corbis eBay Education World Employment Encyclopedia Encarta Excite Fast Search FindLaw FirstGov Google Google Groups Infomine iWon Librarians Index Looksmart Lycos Metacrawler Microsoft Northern Light Open Directory SearchEdu SearchGov Shareware Teoma Thesaurus Thunderstone WayBackMachine

69. Adcock Raises £1,000 For Key Research Into Rare Disorder Touched by the illness of a young boy, an East of England industrial group has raised£1000 for research into the rare congenital disorder, proteus syndrome. http://www.businessweekly.co.uk/news/view_article.asp?article_id=6912

70. Lesion Category 43 43.23 Criteria for the Diagnosis of proteus syndrome. Overview The ProteusSyndrome is a rare condition with a highly variable clinical expression. http://www.medal.org/docs_ch43/doc_ch43.23.html

Table of Contents, Chap. 43 Diagnosis of Proteus Syndrome Overview: The Proteus Syndrome is a rare condition with a highly variable clinical expression. Patients may show a combination of connective tissue nevi epidermal nevi overgrowth of various tissues vascular malformations or benign tumors. These criteria were defined by the First National Conference on Proteus Syndrome held at NIH in 1998. Mandatory general criteria: (1) mosaic distribution of lesions (2) progressive course with some tendency of tissue overgrowth to plateau after adolescence (3) sporadic occurrence Genetics postulates: • The condition is caused by somatic mosaicism with the nonmosaic state lethal. • The trait is neither simply mendelian nor entirely nonmendelian and sometimes imitates a dominant transmission (= "paradominance"). Lesion Category Item Description A connective tissue nevus B epidermal nevus disproportionate overgrowth affecting limbs OR skull OR external auditory meatus OR vertebrae OR viscera specific tumors occurring before end of second decade bilateral ovarian cystadenomas OR parotid monomorphic adenoma C dysregulated adipose tissue lipoma OR regional absence of fat vascular malformations capillary malformations OR venous malformation OR lymphatic malformation facial phenotype combination of: dolichocephaly long face minor downslanting of palpebral fissues and/or mild ptosis low nasal bridge wide or anteverted nares open mouth at rest where: • overgrowth of limbs may affect the arms legs hands feet and/or digits

71. Is NF1 The Elephant Man's Disease? Only in the late 1980s was Merrick's condition rediagnosed as proteus syndrome,a rare genetic disorder typified by overgrowths on one side of the body http://gslc.genetics.utah.edu/units/disorders/nf1/elephantman.cfm

Genetic Science Learning Center at the Eccles Institute of Human Genetics University of Utah Home ... What is NF1? Is NF1 the Elephant Man's Disease? Is NF1 the Elephant Man's Disease? NF1 is not the Elephant Man's disease. Have you heard of the Elephant Man? His is a famous story: Joseph Merrick, also known as The Elephant Man, was born with severe physical deformities and lived as a circus sideshow attraction in 19th-century England. For a long time, scientists and physicians thought that Merrick suffered from NF1. His deformities were similar to those caused by large plexiform neurofibromas , although no physician had seen a case of NF1 as severe as Merrick's. Only in the late 1980s was Merrick's condition re-diagnosed as Proteus Syndrome, a rare genetic disorder typified by overgrowths on one side of the body, enlarged hands or feet, tumor-like growths under the skin and caf©-au-lait spots . The signs of Proteus Syndrome and NF1 are similar, but the disorders are caused by mutations in two different genes. Want to learn more about Joseph Merrick and Proteus Syndrome?

72. Joseph Carey Merrick Tribute Web Site Joseph's disorder, named proteus syndrome, has been recorded in fewerthan 100 cases, ever. Several years ago a US National Institutes http://www.jsitton.pwp.blueyonder.co.uk/elephantman/disease.htm

Joseph Carey Merrick Tribute Web Site 'Virtual' Grave Life Story The Poem Autobiography ... Medical Images The Illness His Holidays Significant dates Hospital Register Queen Victoria ... Books OTHER RELATED PAGES IN THIS SITE Victorian Life Essential Resources Guestbook Site author ... AWARDS The Illness Please make a donation. To find out why, click here or just click the donate button below. One early belief was that Merrick suffered from elephantiasis (a tropical disease), a disorder of the lymphatic system that causes parts of the body to swell to grotesque proportions. Later it was theorized that he had an extremely severe case of neurofibromatosis . This nervous system disorder causes nerve cells to grow out of control, creating large, misshapen tumors. Neurofibromatosis is not phenomenally rare, occurring in one of every 4,000 births, although no known case of neurofibromatosis has ever been as profound as Merrick's condition. In 1979, a much more rare disease was identified as causing overgrowth of bone and other tissue. Joseph's disorder, named

73. Joseph Carey Merrick Tribute Web Site yourself .. not to forget those families affected by proteus syndrome. Readmore. proteus syndrome is an extremely rare disorder. Presently http://www.jsitton.pwp.blueyonder.co.uk/elephantman/author.htm

Joseph Carey Merrick Tribute Web Site 'Virtual' Grave Life Story The Poem Autobiography ... Books OTHER RELATED PAGES IN THIS SITE Victorian Life Essential Resources Guestbook Site author ... AWARDS From the author Please make a donation. To find out why, click here or just click the donate button below. Hello, I'm Jeanette - I'm really pleased you've dropped by to find out more, about probably the world's most courageous man. I have been fascinated by Joseph Merrick for many years. Just like so many of you, I first heard of him by watching the film, 'The Elephant Man'. At the time, it was really hard for me to come to terms with the fact that Joseph actually existed... his hardship seemed just too terrible for words. Without doubt, the things I most admire about him are his inmeasurable courage, his intellect and his remarkable sensitivity. I set myself a task, I really wanted to find out more. Fortunately I live just 30 minutes away from the Whitechapel, now the Royal London Hospital (Joseph's last home), and the hospital's museum was beckoning me.

74. Arch Dermatol -- Page Not Found Diagnosis proteus syndrome. Because of the clinical and microscopicfindings, the patient was diagnosed as having proteus syndrome. http://archderm.ama-assn.org/issues/v137n2/ffull/dof00024-1b.html

Select Journal or Resource JAMA Archives of Dermatology Facial Plastic Surgery Family Medicine (1992-2000) General Psychiatry Internal Medicine Neurology Ophthalmology Surgery MSJAMA Science News Updates Meetings Peer Review Congress The page you requested was not found. The JAMA Archives Journals Web site has been redesigned to provide you with improved layout, features, and functionality. The location of the page you requested may have changed. To find the page you requested, click here HOME CURRENT ISSUE PAST ISSUES ... HELP Error 404 - "Not Found"

75. EXN.ca | Discovery Tibbles published a paper in the British Medical Journal, claiming that Merrick'smysterious condition was caused by the littleknown proteus syndrome, and not http://www.exn.ca/Stories/1996/12/04/03.asp

New explanation for Elephant Man disease discovered. Joseph Cary Merrick, known as the Elephant Man. By: (Default) , December 9, 1996 Michael Jackson isn't the only one who's obsessed with the Elephant Man's skeleton. Apparently, the legendary bones still hold fascination for some British and Canadian scientists as well.Dr. Amita Sharma, the director of a British research team which recently conducted a radiological study of the bones of Joseph Cary Merrick, Victorian England's famed Elephant Man, presented her results at the 82nd Scientific Assembly and Annual Meeting of the Radiological Society of North America in Chicago on Tuesday. According to Dr. Sharma, the research, which was conducted at The Royal London Hospital in the UK, confirms the results of a Canadian study conducted by Dr. M. Michael Cohen Jr. of Dalhousie University and pediatric neurologist John Tibbles. In 1996, Cohen and Tibbles published a paper in the British Medical Journal, claiming that Merrick's mysterious condition was caused by the little-known Proteus Syndrome, and not by neurofibromatosis (NF) as is commonly believed. Merrick Countless explanations for the infamous "Elephant Man disease" have found a featured place in medical journals since 1884. Majority consensus has tended toward labelling the condition as NF, a rare genetic disorder seen in 1 out of every 4000 births, but the physical evidence does not fully support that conclusion.In conducting her research, Sharma showed X-rays of the legendary bones, and 3-D images of Merrick's skull, to a group of radiologists and asked them to determine whether the condition they observed was neurofibromatosis or Proteus Syndrome."We agreed with the Canadian researchers," Sharma said. "Our group concluded that the condition was indeed Proteus Syndrome. We rejected neurofibromatosis because not all of the positive markers for that condition were evident."

76. Immediate Effects Of Therapeutic Facilit... Translate this page Titre/Title, American Journal of Medical Genetics. Article,proteus syndrome. Identification, 84 1999 Pages 389-95. http://www.cidg.com/~marienf/k/i/n/m019309.htm

# Article : A0033838 Cote/Call Number WE103.2/Demarch Auteur/Author Hesse, Stefan Jahnke, Matthias T. Schaffrin, Antje, and others Titre/Title Electroencephalography and Clinical Neurophysiology Article Immediate effects of therapeutic facilitaton on the gait of hemiparetic patients as compared with walking with and without cane. Identification 109 1998 Pages: 515-22 Descripteurs/Descriptors Port de poids Demande par courrier Client (nom, adresse...): Type de demande: PEB Photocp (frais) Commentaires:

77. Your Experiences Your Experiences. Back Jordan WhitewoodNeal - proteus syndrome. Written in November1999. Our son Jordan is four years old.and has 'proteus syndrome'. http://www.steps-charity.org.uk/main/articles/experiences/lld/jordan.htm

78. Online Dermatology Image Library hamartoma,dermatology image,cutis marmorata telangiectatica congenita (CMTC),congenitalphlebectasia,SturgeWeber syndrome,proteus syndrome,Klippel-Trenaunay http://dermatlas.med.jhmi.edu/derm/result.cfm?Diagnosis=107

79. Online Dermatology Image Library scar,psoriasis,psoriasis,psoriasis,lichen planus,histiocytosis X,histiocytosis,hemangioma,granulomaannulare,dermatology image,proteus syndrome,Langerhans cell http://dermatlas.med.jhmi.edu/derm/result.cfm?OutputSet=3&BodySite=16

80. WebGuest - Open Directory Health Conditions And Diseases Sites The CaF Directory A definition of proteus syndrome, its inheritancepattern, pre-natal diagnosis and a support group. NORD http://directory.webguest.com/index.cgi/Health/Conditions_and_Diseases/Genetic_D

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