1. Proteus Syndrome Foundation Support and education for families and professionals. Includes abstracts, brochures,glossary, links and newsletters. http://www.proteus-syndrome.org/

Latest News October 17, 2004 We had our Annual Family Conference. ..more to come Donate to the PSF The PSF is a non-profit organization that raises money to find a cure for proteus syndrome. In Loving Memory of Alexander Hoag "He did a lot in 9 short years." Welcome to the Proteus Syndrome Foundation's new web site! My name is Kim Hoag and I am the Executive Director of the Proteus Syndrome Foundation. I hope you all find our new website easy to navigate and informative. Please be patient while we get it completely up to date with all the information inputted. We will be featuring family stories, medical articles, and all up to date information concerning Proteus syndrome and the families it affects. In October the PSF hosted it's Annual Family Conference. We welcomed many new families and many of our returning families were so happy to be able to spend time with each other. There will be much more follow up writing on the conference and many of the presenters have donated their presentations for publication on this website which will be posted soon. Newsletters Our latest newsletter is now avaliable here Mission Statement The Proteus Syndrome Foundation has been founded to support and educate familes and professionals, and to raise money for research to find a cure for individuals living with Proteus Syndrome.

2. 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

3. 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 how we can help medical information index of conditions ... how you can help 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.

4. Proteus Syndrome Case Reports Pediatric Oncall Find a proteus syndrome case report, including CXR and radiographs. http://www.pediatriconcall.com/fordoctor/casereports/Proteus_syndrome.asp

DOCTOR CORNER Search GO Home Back Ask Doctor Post Query Education Image Gallery Teaching Files Question of the day Specialist Answers Latest Updates Conference Journal Search Original Articles Clinical Trials Search For Pediatricians Hospitals Special Schools Drug Index ... Sign Out PROTEUS SYNDROME Radiology Cases in Pediatric Emergency Medicine Volume 7, Case 4 Craig T. Nakamura, MD UserName Password New Register Forgot password CASE: This is a 16 year old female who presents to the emergency department with a two day history of coughing, productive for small amounts of thin, yellow mucous. She also has two episodes of mild hemoptysis each day (5 milliliters per episode). She had a low grade fever and clear rhinorrhea 5 days ago, which has resolved. She denies shortness of breath, wheezing, chest pain, headaches, malaise, chills, symptoms of reflux, weight loss, rashes, and joint pains. However, she does become dyspneic with prolonged activity. There are several family members with rhinorrhea and low grade fevers. There is no history of recent travel. The patient has a history remarkable for lung cysts of unknown etiology. At the age of 10, she developed similar symptoms. A chest radiograph revealed bilateral cystic changes thought to be secondary to bronchiectasis. A follow-up film several months later reportedly showed a progression of the right middle lobe cyst. Bronchoscopy was normal and a TB skin test was negative. The cyst was surgically excised. Pathology revealed atrophic lung parenchyma lining the cyst and chronic nonspecific inflammation. No atypical cells were present.

5. Proteus Syndrome proteus syndrome Patient Brochure http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

6. Proteus Syndrome Foundation | About Proteus Syndrome | Definition Of Proteus Syn proteus syndrome is a condition which involves atypical growth of the bones, However, not all cases of proteus syndrome are documented, therefore it is http://www.proteus-syndrome.org/html/proteus/definition.htm

Definition of Proteus Syndrome Definition Symptoms Diagnostic Criteria Glossary 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, Hans-Rudolf Wiedemann, named it proteus syndrome, for 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 over 120 documented cases worldwide. However, not all cases of proteus syndrome are documented, therefore it is unknown how many individuals have this syndrome. The syndrome became widely known when it was determined that Joseph Merrick(the patient depicted in the play and movie "The Elephant Man") had severe Proteus syndrome rather than neurofibromatosis as was initially suggested. Home Contact Us Privacy

7. Proteus Syndrome proteus syndrome information, national and international support groups, clinics with genetic counselors and geneticists http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

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

(advertisement) Home Specialties Resource Centers CME ... Patient Education Articles Images CME Advanced Search Consumer Health 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 , Co-Director of The Neurofibromatosis Center of New Jersey, Associate 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

9. Proteus Syndrome Foundation In Loving Memory of Alexander Hoag 7/5/90 9/20/99 "He did a lot in 9 short years." Welcome to the proteus syndrome Foundation's new web site! http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

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

(advertisement) Home Specialties Resource Centers CME ... Patient Education Articles Images CME Patient Education Advanced Search Consumer Health 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 , Section Chief, Assistant Professor, Department of Pediatrics, Section of Dermatology, Children's Hospital of Philadelphia and University of Pennsylvania; David F Butler, MD

11. Proteus Syndrome proteus syndrome Is present at birth and is characterized by many fatty lesions of enlarged cystic lymph vessels, overgrowth of one side of the http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

12. Proteus Syndrome Foundation UK THE proteus syndrome FOUNDATION, UNITED KINGDOM. Our Patron, John Hurt The actorwho portrayed the Elephant Man in the award winning film 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. Joseph Carey Merrick Tribute Web Site Very Best Wishes, Jeanette Sitton * It is currently believed that Joseph had proteus syndrome. Life Story http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

14. Proteus Syndrome Foundation UK proteus syndrome is a condition which involves atypical growth of the bones, skin, Below are some photographs of common signs of proteus syndrome http://www.proteus-syndrome.org.uk/psf_photos.html

navItem('',''); //need a blank item here to insert first vertical separator navItem('A POEM FOR JORDAN','psf_poemforjordan.html'); navItem('MEDICAL ARTICLES','psf_medicalarticles.html'); PHOTOS OF COMMON SIGNS Proteus Syndrome is a condition which involves atypical growth of the bones, skin, head and a variety of other symptoms. Below are some photographs of common signs of Proteus Syndrome: Back Knees Left foot Both hands Left hand Both legs

15. Proteus Syndrome What is proteus syndrome? This is a condition that children are born with. It causes some parts of the body to grow too much. http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

16. Proteus Syndrome proteus syndrome information, national and international support groups, clinicswith genetic counselors and geneticists. 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 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.

17. PROTEUS SYNDROME Contact A Family - For Families With Disabled A definition of proteus syndrome, its inheritance pattern, prenatal diagnosis and a support group. http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

18. Proteus Syndrome proteus syndrome is condition which involves atypical growth of the bones, skin, At this time, it is unknown how many individuals have proteus syndrome, 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.

19. Guardian Unlimited The Guardian We're In This Together Joseph Merrick, the "Elephant man", was wrongly thought to have NF1 (he suffered from proteus syndrome). http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

20. Proteus Syndrome proteus syndrome (Wiedemann s Syndrome; Elephant Man Disease; proteus syndromewith infantile myofibromatosis and severely disturbed adipose growth and 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

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