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Rombergs Syndrome: more detail

The Official Patient's Sourcebook on Parry-Romberg Syndrome: A Revised and Updated Directory for the Internet Age by Icon Health Publications, 2002-10
Beneficial effect of immunosuppressive drugs on Parry-Romberg syndrome: a case report and review of the literature.(Case Report): An article from: Southern Medical Journal by Cengiz Korkmaz, Baki Adapinar, et all 2005-09-01

lists with details

Bomis:
Mdifferencesparry-rombergs-syndrome-health Mdifferences-sagittal-synostosis-health Mdifferences-sticklers-syndrome-health
http://www.bomis.com/rings/Mdivision_1-feyenoord_rotterdam/
Blueprints Plastic Surgery - Book Information
Goldenhars syndrome. Encephaloceles. - rombergs Disease. - Fibrous Dysplasia.- Facial Trauma. Chapter 7 Breast and Trunk Reconstruction
http://www.blackwellpublishing.com/book.asp?ref=1405104465
Guestbook - Volume I
Comments My niece actually has treacher collins syndrome. rombergs isanother no treatment, no cure, we have no idea what to do with you disorder.
http://www.treachercollins.org/gbook1.html

Extractions: Comments : I am glad you quoted me on your page ("The human heart feels what the eyes cannot see and knows what the mind cannot understand"). You may also be interested in reading my newest book SPIRITUAL GUIDES TO HOLISTIC HEALTH AND HAPPINESS available online through either Barnes and Noble or Amazon. Best wishes! Robert E. Valett Name Amanda
Driscoll Children’s Craniofacial And Cleft Center
+ Godenhars + Proteus syndrome + Pierre Robin + Nagers + Sticklers + AmnioticBand syndrome + Beckwith Weidemann + rombergs Hemifacial Atrophy
http://www.driscollchildrens.org/craniofacial/beforeafter.asp
NEUROLOGICAL SCOLIOSIS,
Leg syndrome rombergs Disorder Schizophrenia Scoliosis Self Injury SensoryIntegration Disorder Preview by Thumbshots UM Spine Center Patient Kimberly
http://www.digitaldesignstudio.it/scoliosis/n.asp?cerca=neurological_scoliosis
Support Groups ~ MGH Neurosurgical Service
rombergs Disorder Schizophrenia Shy Drager Silicone Related Diseases Chronic Pain syndrome Chat Room Discussions about Chronic Pain syndrome.
http://neurosurgery.mgh.harvard.edu/SptGps.htm

Extractions: The MGH Brain Aneurysm/ AVM Center has formed a Brain AVM Support Group for patients that have or that are about to have brain AVM embolization, brain AVM surgery and/or both. The purpose for this support group is to provide patients and their families with the educational tools and emotional support needed to get them through this difficult time. Our goal is to try and help alleviate fears and concerns through education and group discussions. Issues such as the origin of brain AVM's, the course of treatment, and overall prognosis will be among some of the topics we will be discussing. The leader's task is to support patients and their families while they recognize and hopefully resolve concerns they have regarding the procedures. Brain Tumor Support Group
Support Organizations For Rare Disorders
rombergs@hotmail.com RussellSilver syndrome Network 1327 N. Harlem Avenue OakPark, IL 60302 Fax (708) 383-0899 Toll Free 800-3-MAGIC-3
http://www.cord.ca/Support/support.asp?List=3
Romberg Syndrome / Family Village Library
General information, contacts, online discussion groups and links.
http://www.familyvillage.wisc.edu/lib_rombs.html
Facial Neuralgia Resources: Template Conditions
ParryRomberg syndrome is a rare disorder characterized by slowly Symptoms andphysical findings associated with Parry-Romberg syndrome usually become
http://facial-neuralgia.org/conditions/romberg.html

Extractions: Related Disorders DESCRIPTION CAUSES SYMPTOMS ONLINE RESOURCES The names Progressive Facial Hemiatrophy, Progressive Hemifacial Atrophy, Romberg Syndrome, PRS, HFA are synonyms for this disorder TAKE A CLOSER LOOK READ ABOUT KELLEY , an extraordinary little girl who suffers from Parry-Romberg Syndrome, in an article published in the Rocky Mountain News. Don't miss reading the MANY MESSAGES sent to her from people all over the world. The following information is excerpted from the National Organization for Rare Disorders, Inc.database on rare disorders and is posted in compliance with the FAIR USE DOCTRINE and is for educational purposes only and not for commercial use. Description
Parry Romberg Syndrome
Parry Romberg syndrome is a rare disorder characterized by slowly progressivedegeneration (atrophy)
http://my.webmd.com/hw/raising_a_family/nord489.asp

Extractions: Parry-Romberg syndrome is a rare disorder characterized by slowly progressive degeneration (atrophy) of the soft tissues of half of the face (hemifacial atrophy). Some individuals may experience distinctive changes of the eyes and hair; and neurological abnormalities including episodes of uncontrolled electrical disturbances in the brain (seizures) and episodes of severe pain in tissues supplied by the fifth cranial nerve (trigeminal nerve) including the mouth, cheek, nose, and/or other facial tissues (trigeminal neuralgia). Symptoms and physical findings associated with Parry-Romberg syndrome usually become apparent during the first or early during the second decade of life. In rare cases, the disorder is apparent at birth. The majority of individuals with Parry-Romberg syndrome experience symptoms before the age of 20 years.
Parry-Romberg Syndrome
Online. Founded 1997. Mutual support for persons affected by Parry Romberg ssyndrome (aka progressive
http://my.webmd.com/hw/health_guide_atoz/shc29par.asp

Extractions: Mutual support for persons affected by Parry Romberg's syndrome (aka progressive facial hemiatrophy or Romberg's syndrome), a rare, genetic disorder, their families and friends. Aim is to locate affected persons and offer strength, hope, courage and friendship. Communication through a group mailing list and via mail. Some face to face meetings. 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
Parry Romberg Syndrome
Stories from people affected by Parry Romberg syndrome, support and information.
http://www.cannylink.com/diseaseparryromberg.htm
Parry Romberg Syndrome
Links to information and resources for Parry Romberg syndrome.
http://rarediseases.about.com/cs/parryromberg/

Extractions: zJs=10 zJs=11 zJs=12 zJs=13 zc(5,'jsc',zJs,9999999,'') zfs=0;zCMt='a70' About Rare / Orphan Diseases Rare Diseases Essentials ... Help zau(256,140,140,'el','http://z.about.com/0/ip/417/C.htm','');w(xb+xb+' ');zau(256,140,140,'von','http://z.about.com/0/ip/496/6.htm','');w(xb+xb); Sign Up Now for the Rare / Orphan Diseases newsletter!
Kelley Sperry Parry Romberg Syndrome Real Life Hero Celebrity News
Meet Kelley Sperry, a 10 year old girl from Denver, Colorado. Her story has beenan inspiration to hundreds of people whose lives she s touched.
http://rarediseases.about.com/library/weekly/aa112001a.htm

Extractions: zJs=10 zJs=11 zJs=12 zJs=13 zc(5,'jsc',zJs,9999999,'') zfs=0;zCMt='a70' About Rare / Orphan Diseases Rare Diseases Essentials ... Help zau(256,140,140,'el','http://z.about.com/0/ip/417/C.htm','');w(xb+xb+' ');zau(256,140,140,'von','http://z.about.com/0/ip/496/6.htm','');w(xb+xb); Sign Up Now for the Rare / Orphan Diseases newsletter! November 20, 2001 What makes a hero? For some people, heroism comes from an almost superhuman act of bravery. For others, heroism comes by virtue of their compassion for their fellow man. But for some, heroism simply comes from being. Recently, I had the opportunity to interview one such individual and her mother. Their family's story truly classifies them as "Everyday Heroes". I first learned of 10 year old Kelley Sperry when I received the following email, "Our daughter's face is wasting away... and she keeps going... and going... She's wonderful!" This message caught my attention more than any other I've received in recent months, and I contacted the sender, who turned out to be Kelley's mother, Donna Sperry of suburban Denver, Colorado. In my correspondence with her, it became apparent that little Kelley was something special, and someone who could serve as an example to us all. In other words, an "Everyday Hero".
Parry Romberg Syndrome
ParryRomberg syndrome is a rare disorder characterized by slowly progressivedegeneration (atrophy) of the soft tissues of half of the face (hemifacial
http://www.bchealthguide.org/kbase/nord/nord489.htm

Extractions: It is possible that the main title of the report Parry Romberg Syndrome is not the name you expected. Please check the synonyms listing to find the alternate name(s) and disorder subdivision(s) covered by this report. Parry-Romberg syndrome is a rare disorder characterized by slowly progressive degeneration (atrophy) of the soft tissues of half of the face (hemifacial atrophy). Some individuals may experience distinctive changes of the eyes and hair; and neurological abnormalities including episodes of uncontrolled electrical disturbances in the brain (seizures) and episodes of severe pain in tissues supplied by the fifth cranial nerve (trigeminal nerve) including the mouth, cheek, nose, and/or other facial tissues (trigeminal neuralgia). Symptoms and physical findings associated with Parry-Romberg syndrome usually become apparent during the first or early during the second decade of life. In rare cases, the disorder is apparent at birth. The majority of individuals with Parry-Romberg syndrome experience symptoms before the age of 20 years. In individuals with the disorder, initial facial changes usually involve the tissues above the upper jaw (maxilla) or between the nose and the upper corner of the lip (nasolabial fold) and progress to involve the angle of the mouth, the areas around the eye, the brow, the ear, and/or the neck. Progressive tissue wasting can be on either side of the face. In some rare cases, the atrophy may be bilateral. Affected areas may demonstrate shrinkage and atrophy of tissues beneath the skin (subcutaneous tissue), the layer of fat under the skin (subcutaneous fat), and underlying cartilage, muscle, and bone.
NORD - National Organization For Rare Disorders, Inc.
ParryRomberg syndrome is a rare disorder characterized by slowly Symptoms andphysical findings associated with Parry-Romberg syndrome usually become
http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Parry Romberg
The DRM WebWatcher: Parry Romberg Syndrome
This section of The DRM WebWatcher describes the best online resources aboutParry Romberg syndrome.
http://www.disabilityresources.org/PARRY.html

Extractions: Home Subjects States Librarians ... Contact Us The DRM WebWatcher Parry Romberg Syndrome Updated 3/2003 A B C D ... About/Hint/Link Parry Romberg syndrome (also known as progressive hemifacial atrophy or HFA) is a rare disorder characterized primarily by the wasting away of the tissue on one side of the face. Beyond the Mirror This well-written article from the Rocky Mountain News describes the impact of Parry Romberg syndrome on a 10-year-old girl and her family. Hemifacial Atrophy, Progressive A technical overview and references from the Online Mendelian Inheritance in Man (OMIM) database. NINDS Parry Romberg Syndrome Information Page A brief overview of Parry Romberg syndrome from The National Institute of Neurological Disorders and Stroke. The Romberg's Connection This personal website represents "an international support group made up of over 200 individuals and families whose lives are affected by Rombergs Syndrome [and who have] come together to offer our strength, courage, support and friendship to one another." Its contents include a message board relating to surgery, frequently asked questions, a short online newsletter, family photos and stories, and some links. Related Subjects Craniofacial Disorders Neurological Disorders Rare Disorders Resources in your state (c) 1997-2005 Disability Resources, inc.
Hill Health Topics A-Z - Parry Romberg Syndrome
Parry Romberg syndrome. National Organization for Rare Disorders. Important Itis possible that the main title of the report Parry Romberg syndrome is not
http://www.healthwise.net/hillhealth/Content/StdDocument.aspx?DOCHWID=nord489&SE
Parry-Romberg Syndrome, Eastern Carolina
ParryRomberg syndrome - University Health Systems of Eastern Carolina servestarboro, ahoskie, edento, winsor, maxhead, dear county, outebanks counties in
http://www.uhseast.com/117905.cfm

Extractions: Information about national and local self-help organizations and support groups. This information is provided as a resource and does not constitute an endorsement for any group. It is the responsibility of the reader to decide whether a group is appropriate for his/her needs. For evidence-based information on diseases, conditions, symptoms, treatment and wellness issues, continue searching this site. Online. Founded 1997. Mutual support for persons affected by Parry Romberg's syndrome (aka progressive facial hemiatrophy or Romberg's syndrome), a rare, genetic disorder, their families and friends. Aim is to locate affected persons and offer strength, hope, courage and friendship. Communication through a group mailing list and via mail. Some face to face meetings. 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.
Parry Romberg Syndrome Synonyms, Eastern Carolina
Parry Romberg syndrome Synonyms University Health Systems of Eastern Carolinaserves tarboro, ahoskie, edento, winsor, maxhead, dear county,
http://www.uhseast.com/113840.cfm

Extractions: It is possible that the main title of the report Parry Romberg Syndrome is not the name you expected. Please check the synonyms listing to find the alternate name(s) and disorder subdivision(s) covered by this report. Parry-Romberg syndrome is a rare disorder characterized by slowly progressive degeneration (atrophy) of the soft tissues of half of the face (hemifacial atrophy). Some individuals may experience distinctive changes of the eyes and hair; and neurological abnormalities including episodes of uncontrolled electrical disturbances in the brain (seizures) and episodes of severe pain in tissues supplied by the fifth cranial nerve (trigeminal nerve) including the mouth, cheek, nose, and/or other facial tissues (trigeminal neuralgia). Symptoms and physical findings associated with Parry-Romberg syndrome usually become apparent during the first or early during the second decade of life. In rare cases, the disorder is apparent at birth. The majority of individuals with Parry-Romberg syndrome experience symptoms before the age of 20 years. In individuals with the disorder, initial facial changes usually involve the tissues above the upper jaw (maxilla) or between the nose and the upper corner of the lip (nasolabial fold) and progress to involve the angle of the mouth, the areas around the eye, the brow, the ear, and/or the neck. Progressive tissue wasting can be on either side of the face. In some rare cases, the atrophy may be bilateral. Affected areas may demonstrate shrinkage and atrophy of tissues beneath the skin (subcutaneous tissue), the layer of fat under the skin (subcutaneous fat), and underlying cartilage, muscle, and bone.

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