1. NORD - National Organization For Rare Disorders, Inc. Offers synonyms, a general discussion and further resources. http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Proteus Syndr

2. Welcome To The Proteus Syndrome Foundation Home Page Support and education for families and professionals. Includes abstracts, brochures, glossary, links and newsletters. http://www.proteus-syndrome.org/

Welcome to the Proteus Syndrome Foundation Home Page Run or walk in the Alex Hoag Run for Sunshine 5K July 17 We are a 501C3 not-for-profit organization. The Proteus Syndrome Foundation 4915 Dry Stone Dr. Colorado Springs, CO 80918 In Loving Memory of Alexander Hoag "He did a lot in 9 short years." Home What is Proteus Syn drome? ... Donate This Site was updated by McCaskey Advertising Concepts

3. Proteus Syndrome Patient Brochure. Terms and Definitions associated with proteus syndrome, compiled by Susan Beachler. Newsletter Spring 1997. Newsletter - Fall 1997. Also See proteus syndrome. Patient Brochure proteus syndrome. proteus syndrome Foudation. 6235 Whetstone Dr. Web Pagehttp//www.proteus-syndrome.org/ http://www.kumc.edu/gec/support/proteus.html

Proteus Syndrome Proteus Syndrome Foundation Proteus Syndrome Foundation 4915 Dry Stone Dr. Colorado Springs, CO 80918 Phone: 719.660.1346 (contact: Kim Hoag) E-mail: kimkhoag@adelphia.net Web Page: http://www.proteus-syndrome.org/ Diagnostic Criteria Proteus Syndrome Foundation , United Kingdom Also See: Proteus Syndrome , BPlecher article, eMedicina Proteus Syndrome , Birth Disorder Information Directory Inheritance in Man (OMIM) - lists references Proteus information, Online Mendelian Inheritance in Man (OMIM) - includes references (.pdf) InfoMedOnline, Venezuela Proteus Syndrome , Contact a family, United Kingdom PTEN gene Genetics Home Reference National Library Medicine, NIH Proteus Syndrome Research , LGBiesecker, National Human Genome Research Institute (NHGRI), National Institutes of Health (NIH) Proteus Syndrome information from The National Organization for Rare Disorders (NORD) Proteus' Syndrome , WhoNamedIt Proteus Syndrome , infant, Indian Pediatrics National organizations information on genetic conditions or birth defects Terms and Definitions associated with Proteus Syndrome compiled by Susan Beachler Information for Siblings and Family Members National organizations information on genetic conditions/birth defects variety of resources Limb anomalies , resources for different size shoe and glove exchange, etc.

4. Proteus Syndrome proteus syndrome Patient Brochure. What you need to know about proteus syndrome. proteus syndrome Foundation What is proteus syndrome? proteus syndrome is condition which involves http://www.kumc.edu/gec/support/protwww.html

Proteus Syndrome Patient Brochure What you need to know about Proteus Syndrome Proteus Syndrome Foundation 609 East Mount Vernon Drive Blue Springs, MO 64014 e-mail: abscit@aol.com Web site: http://www.proteus-syndrome.org/ What is Proteus Syndrome? Proteus Syndrome is condition which involves atypical growth of the bones, skin, head, and a variety of other symptoms. This condition was first identified by Michael Cohen, Jr., DMD, Ph.D., in 1979. In 1983, a German pediatrician, Has Rudolf Wiedemann, named it Proteus Syndrome, for the Greek God Proteus "the polymorphous" presumably because of the variable manifestations in the four unrelated boys first identified with the syndrome. At this time, it is unknown how many individuals have Proteus Syndrome, since not all individuals are reported in the medical literature. However, there are over 50 reported cases worldwide. Reported cases have been isolated occurrences in families, suggesting that the condition is not hereditary. It affects both sexes equally, and has no particular racial, geographical or ethnic distribution. Proteus Syndrome is an extremely variable condition. The severity of the syndrome ranges from mild cases to severe. There is, as yet, no way to detect who will have a mild case and who will develop serious complications.

5. What Is Proteus Syndrome? The proteus syndrome Foundation supports and educates families and professionals, and raises money for research to find a cure for individuals living with proteus syndrome. What is proteus syndrome? proteus syndrome is a condition which involves atypical growth of the Wiedemann, named it proteus syndrome, for the Greek God Proteus the polymorphous http://www.proteus-syndrome.org/html/whatisps.htm

What is Proteus Syndrome? Signs of Proteus Syndrome The development of multiple benign tumor-line nodules (Harmatomatous) Partial gigantism and asymmetry of limbs Increased size of an organ, or the body, or bones (Hypertrophy) Bony Tumours (Osteomas) Raised rough Skin (Verrucoul epidermal naevi) Deep lines and overgrowth of soft tissue on the soles of the feet (Planter Hyperplasia) Benign tumors made up of new-formed blood vessels (Hemangiomas) Benign tumors usually composed of mature fat cells (Lipomas) Tumor consisting of lymphatic vessels (Lymphangiomata) Overgrowth of bone (Hyperostoses) Home What is Proteus Syn drome? ... Donate This Site was updated by McCaskey Advertising Concepts

6. EMedicine - Proteus Syndrome : Article By Beth A Pletcher, MD proteus syndrome proteus syndrome is a rare condition that can be loosely categorized as a hamartomatous disorder. proteus syndrome. http://www.emedicine.com/ped/topic1912.htm

(advertisement) Home Specialties CME PDA ... Patient Education Articles Images CME Patient Education Advanced Search Link to this site Back to: eMedicine Specialties Pediatrics Genetics And Metabolic Disease Proteus Syndrome Last Updated: December 12, 2003 Rate this Article Email to a Colleague Synonyms and related keywords: pleioproteus syndrome, elephant man disease, gigantism, limb overgrowth AUTHOR INFORMATION Section 1 of 11 Author Information Introduction Clinical Differentials ... Bibliography Author: Beth A Pletcher, MD , Director of Neurofibromatosis Center, Assistant Professor, Department of Pediatrics, University of Medicine and Dentistry of New Jersey Beth A Pletcher, MD, is a member of the following medical societies: American Academy of Pediatrics , and American College of Medical Genetics Editor(s): Elaine H Zackai, MD , Director of Clinical Genetics Center, Professor of Pediatrics, Department of Pediatrics, Division of Human Genetics and Molecular Biology, University of Pennsylvania, Children's Hospital of Philadelphia; Robert Konop, PharmD

7. PROTEUS SYNDROME: Contact A Family - For Families With Disabled Children: Inform A definition of proteus syndrome, its inheritance pattern, prenatal diagnosis and a support group. http://www.cafamily.org.uk/Direct/p50.html

printer friendly PROTEUS SYNDROME home more about us in your area conditions information ... how you can help search this site Did you find this page helpful? yes no Proteus syndrome is a rare disorder first identified in 1979 but with cases described in the literature since 1856. The clinical features of Proteus syndrome are overgrowth/enlargement of soft tissue and bone which can affect any area of the body but often involving the hands and/or the feet, the skull and sometimes the whole of one side of the body (hemihypertrophy) and blood vessel (vascular) abnormalities. Superficial warty birthmarks (epidermal naevi), soft deeper (subcutaneous) lumps, thickening of the skin on the soles and bony problems, in particular, of the skull, hand/feet and curvature of the spine may also be present. The abnormalities seen in Proteus syndrome are present at birth but may become more apparent and develop with age. The clinical features described may not all be present in any one affected individual and the severity can vary widely. The nature of the varied complications of the disorder depend on the site and severity of the problem. Medical care requires a multidisciplinary approach covering orthopaedic, dermatological, genetic, surgical, dental, ophthalmological, radiological and psychological management.

8. Proteus' Syndrome (www.whonamedit.com) Proteus' syndrome A congenital syndrome characterised by a variety of abnormalities Also known as Wiedemann's syndrome. It has been suggested that proteus syndrome is the condition that Joseph http://www.whonamedit.com/synd.cfm/997.html

Home List categories Eponyms A-Z Biographies by country ... Contact Whonamedit.com does not give medical advice. This survey of medical eponyms and the persons behind them is meant as a general interest site only. No information found here must under any circumstances be used for medical purposes, diagnostically, therapeutically or otherwise. If you, or anybody close to you, is affected, or believe to be affected, by any condition mentioned here: see a doctor. Proteus' syndrome Also known as: Wiedemann's syndrome Synonyms: Proteiform syndrome. Associated persons: Proteus Proteus Hans-Rudolf Wiedemann Description: A congenital syndrome characterised by a variety of abnormalities, most commonly by asymmetry of the arms and legs with partial enlargement of the hands and/or feet, hemihypertrophy - overgrowth of one side of the face, body, or limbs - thickening of the skin and subcutaneous tissues, subcutaneous masses, vascular disorders, epidermal naevi, and macrodactyly; accelerated growth during early years, cystiform pulmonary abnormalities, visceral manifestations from abdominal and pelvic lipomatosis, macrocephaly or asymmetry of the skull with bony prominences due to hemihypertrophy, scoliosis and kyphosis, muscle atrophy, and convulsions. Aetiology unknown. Reported cases have been isolated occurrences in families, suggesting that the condition is not hereditary. It affects both sexes equally, and has no particular racial, geographical or ethnic distribution.

9. Proteus Syndrome / Family Village Library Search Google for "proteus syndrome" Who to Contact. proteus syndrome Foundation. 6235 Whetstone Dr. http://www.familyvillage.wisc.edu/lib_proteus.html

Proteus Syndrome Who to Contact Where to Go to Chat with Others Learn More About It Web Sites ... Search Google for "Proteus Syndrome" Who to Contact Proteus Syndrome Foundation 6235 Whetstone Dr. Colorado Springs, CO 80918 E-mail: proteusorg@aol.com Web: http://www.proteus-syndrome.org/ The Proteus Syndrome Foundation is a 501 (c)3 not-for-profit organization founded in 1993 and governed by a voluntary Board of Directors, most of whom are parents of a child with Proteus Syndrome. The main goals are patient and family support, publice education, medical staff education, promotion and funding of research and ultimately the treatment and cure of Proteus Syndrome. The Medical Advisory Board of the PSF consists of seven clinical and research medical professionals. This international group of men and women are noted experts on Proteus Syndrome throughout the world. Where to Go to Chat with Others We are unaware of any discussion forums specifically for this diagnosis. However, there are several forums that may be of interest to parents of children with disabilities or special health care needs regardless of diagnosis. See General Disability On-Line Discussion Groups Learn More About It The Skin of Patients with Proteus Syndrome What is Proteus Syndrome?

10. Zoinkpanooley; Proteus Syndrome Zoinkpanooley Over One Web Page Celebrating the Life and Times of Darlene Takagi. proteus syndrome. Homepage. Introduction. What's New ORIGIN OF NAME. proteus syndrome was named after Proteus, the Greek sea god. Proteus was portrayed as a prophet or king http://www.geocities.com/Tokyo/Pagoda/4224/proteus.html

Proteus Syndrome Homepage Introduction What's New Site Index ... Vegetarianism Proteus Syndrome Lite Side Clinic Music Bookshelf Darlene TV ... view guestbook ORIGIN OF NAME Proteus syndrome was named after Proteus, the Greek sea god. Proteus was portrayed as a prophet or king of the island of Pharos, near the Nile River's mouth, or of the island of Karpatos, between Rhodes and Crete. He lived in a cave on the island, and only when asleep, could he be made to give his prophecies. While awake, he was able to change his form at will, so as not to be recognized CAUSES Because of the rarity of the disease, the cause of the syndrome is somewhat unknown. There have been hypotheses made that on chromosome 1 there is an additional segment of heterochromatin and euchromatin attached to the long arm. Scientists also hypothesize that proteus syndrome may be caused by a new somatic mutation, otherwise known as a mutation of cells once the egg and sperm are united. It is also hypothesized that the symptoms most likely result from somatic mosaicism for a dominant fatal gene, but the gene locus still hasn't been acknowledged. No evidence for the hypotheses is currently available to support these and other hypotheses for the causes of the disease TYPE AND SYMPTOMS OF DISEASE The Elephant Man;

11. Proteus Syndrome Links to information and resources for proteus syndrome. Rare/Orphan Diseases. proteus syndrome. Guide picks NORD proteus syndrome. A brief definition from the National Organization for Rare http://rarediseases.about.com/cs/proteussyndrome

zJs=10 zJs=11 zJs=12 zJs=13 zc(5,'jsc',zJs,9999999,'') About Rare / Orphan Diseases Home Essentials ... Rare cancers zau(256,152,145,'gob','http://z.about.com/5/ad/go.htm?gs='+gs,''); Is it a Rare Disease? Rare Diseases A - B Rare Diseases C - D Rare Diseases E - H ... Help zau(256,138,125,'el','http://z.about.com/0/ip/417/0.htm','');w(xb+xb); Stay Current Subscribe to the About Rare / Orphan Diseases newsletter. zau(256,152,100,'hs','http://z.about.com/5/ad/hs.htm?zIhsid=00',''); Search Rare / Orphan Diseases Proteus Syndrome Guide picks A very rare hereditary disorder characterized by lesions of the lymph vessels, overgrowth on one side of the body, an abnormally large head, and abnormal spots on the skin. The Elephant Man's Bones Reveal Mystery Article looks at the medical findings in the case of John Merrick, the Elephant Man. From the About.com Guide to Rare/Orphan Diseases. Contact A Family (U.K.) Information on the syndrome and addresses of support groups in the U.K. Dermatology Online Atlas Photographs of a case of Proteus syndrome. Diagnostic Radiology Department at NIH (U.S.)

12. Proteus Syndrome Foundation UK THE proteus syndrome FOUNDATION, UNITED KINGDOM Our Patron, John Hurt The actor who portrayed the Elephant Man in the award winning film of the same name. http://www.proteus-syndrome.org.uk/

navItem('',''); //need a blank item here to insert first vertical separator navItem('WHAT IS PROTEUS SYNDROME?','psf_whatis.html'); navItem('FREQUENTLY ASKED QUESTIONS','psf_faqs.html'); navItem('PHOTOS OF COMMON SIGNS','psf_photos.html'); THE PROTEUS SYNDROME FOUNDATION, UNITED KINGDOM Our Patron, John Hurt The actor who portrayed the "Elephant Man" in the award winning film of the same name. ...finding the cause, discovering a cure... supporting the children with this rare genetic disorder

13. Proteus Syndrome Foundation UK WHAT IS PROTEUS? proteus syndrome is a condition which involves atypical growth of the bones, skin, head and a variety of other symptoms. http://www.proteus-syndrome.org.uk/psf_whatis.html

navItem('',''); //need a blank item here to insert first vertical separator navItem('FREQUENTLY ASKED QUESTIONS','psf_faqs.html'); navItem('MEDICAL ARTICLES','psf_medicalarticles.html'); navItem('PHOTOS OF COMMON SIGNS','psf_photos.html'); WHAT IS PROTEUS? Proteus Syndrome is a condition which involves atypical growth of the bones, skin, head and a variety of other symptoms. This conditon was first identified by Michael Cohen Jr., DMD, PhD., in 1979. In 1983 a German Pediatrician, Has Rudolf Wiedemann, named it proteus syndrome, after the Greek God Proteus “the polymorphous” presumably because of the variable manifestation in the four unrelated boys first identified with the syndrome. At this time there are approximately 90 documented cases worldwide. However, not all cases of proteus syndrome are documented cases, therefore it is unknown how many individuals have this syndrome. It has been suggested that Proteus Syndrome is the condition that Joseph Merrick (known as the Elephant Man) had, rather than neurofibromatosis as was initially suggested. COMMON SIGNS OF PROTEUS SYNDROME Partial enlargement of the hands and/or feet, usually asymmetric.

14. The Elephant Man's Mistaken Identity Article showing that Merrick, diagnosed during his life as suffering from Neurofibromatosis, actually suffered from proteus syndrome. http://www.noveltynet.org/content/paranormal/www.parascope.com/articles/0397/ele

15. EMedicine - Proteus Syndrome : Article By Antonio Vozza, MD proteus syndrome proteus syndrome (PS) is a sporadically occurring hamartomatous disorder with multifarious mesodermal malformations. proteus syndrome. http://www.emedicine.com/derm/topic721.htm

(advertisement) Home Specialties CME PDA ... Patient Education Articles Images CME Patient Education Advanced Search Link to this site Back to: eMedicine Specialties Dermatology Pediatric Diseases Proteus Syndrome Last Updated: April 24, 2002 Rate this Article Email to a Colleague Synonyms and related keywords: PS, hamartomatous disorder, multifarious mesodermal malformation, plurifocal overgrowth, partial gigantism, regional gigantism AUTHOR INFORMATION Section 1 of 10 Author Information Introduction Clinical Differentials ... Bibliography Author: Antonio Vozza, MD , Associate Chairman, Assistant Professor, Department of Dermatology, Second University of Naples, Italy Coauthor(s): Carlo Tolone, MD , Department of Pediatrics, Second University of Naples; Eleonora Ruocco, MD , Staff Physician, Assistant Professor, Department of Dermatology and Venereology, University of Naples Medical School Editor(s): Albert C Yan, MD , Assistant Professor, Department of Pediatrics, Section of Dermatology, Children's Hospital of Philadelphia and University of Pennsylvania; David F Butler, MD

16. Proteus Syndrome HOME. proteus syndrome (Wiedemann s Syndrome; Elephant Man Disease; Partial Gigantism of Hands and Feet with Nevi, Hemihypertrophy, and Macrocephaly). http://www.bdid.com/proteus.htm

HOME Proteus Syndrome (Wiedemann's Syndrome; Elephant Man Disease; Partial Gigantism of Hands and Feet with Nevi, Hemihypertrophy, and Macrocephaly) Diagnosis and Discussion: Proteus Syndrome PDF file of diagnosis PROTEUS SYNDROME Simple Definition ... HOME

17. OMIM - PROTEUS SYNDROME http://www.ncbi.nlm.nih.gov/entrez/dispomim.cgi?id=176920

18. Entrez PubMed Click here to read Germline mutation of the tumour suppressor PTEN in proteus syndrome. Smith JM, Kirk EP, Theodosopoulos G, Marshall http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=1

19. Proteus Syndrome The First National Conference on proteus syndrome found the most important diagnostic criteria include Mosaic distribution of lesions Progressive course http://www.thedoctorsdoctor.com/diseases/proteus_syndrome.htm

Background Some of the clinical features, such as subcutaneous masses, may occur at any site of the body; however, other findings are dependent on involvement of specific sites, such as cranial exostosis. Some of the major clinical features: Hemihypertrophy (partial or complete) Macrodactyly Subcutaneous masses (lipomatous, hemangiomatous, lymphangiomatous, and hybrid tumors) Plantar or palmar masses (connective tissue nevi or lipomas) Exostoses (cranial or distal) Epidermal nevus (linear or whorled) Scoliosis The First National Conference on Proteus Syndrome found the most important diagnostic criteria include: Mosaic distribution of lesions Progressive course Sporadic occurrence Connective tissue nevus Epidermal nevus Disproportionate overgrowth (limbs, skull, external auditory meatus, vertebra, or viscera) Specific tumors Dysregulated adipose tissue (lipomas, lipoatrophy) Vascular malformation, and facial phenotype PATHOGENESIS CHARACTERIZATION Possible somatic mutation The cause of Proteus syndrome is unknown, and no specific gene mutation has been identified

20. Dermatlas: Online Dermatology Image Library Dermatology Image,Proteus Syndrome,v Dermatlas Dermatology Images vascular malformation,dermatology image,proteus syndrome images. Match ALL words Match ANY word. Dermatology Images, http://dermatlas.med.jhmi.edu/derm/result.cfm?Diagnosis=1768725650

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