Page 2 JacksonWeiss, Langer-Geidon, parry-rombergs, Pfeiffer, Pierre-Robin, Russell-Silver, Pierre-Robin syndrome/Sequence Garland Neal s PRS Story http://members.tripod.com/~Craniofacial/page2.htm
Extractions: setAdGroup('67.18.104.18'); var cm_role = "live" var cm_host = "tripod.lycos.com" var cm_taxid = "/memberembedded" Search: Lycos Tripod Murderball Share This Page Report Abuse Edit your Site ... Next The Craniofacial Disorders indexed on this page are: Jackson-Weiss, Langer-Geidon, Parry-Rombergs, Pfeiffer, Pierre-Robin, Russell-Silver, Saethre-Chotzen, Sagittal Synostosis, Shprintzen-Goldberg, Stickler, and Treacher-Collins. Page 1 includes Antley-Bixler, Apert, Arhinia, Baller-Gerold, Carpenter, Craniosynostosis, Crouzon and Goodman. Jackson-Weiss
World Craniofacial Foundation Our group was formed in June of 97 by Theresa Hildebrand and Terry Burau forpeople with Parry Rombergs syndrome. Rombergs is a very rare disorder causing http://www.worldcf.org/support_groups.cfm
Extractions: The World Craniofacial Foundation is dedicated to helping children and familes who experience deformities of the head and/or face by providing support and access to life-changing procedures. Reconstruct a face; create a new life. Today, we have the knowledge and technology to make these children look and feel normal. It is now possible to acheive excellent outcomes in the treatment of even the most complex craniofacial deformities. For the task ahead, support and participation is needed from all of us in order to transform the lives of those who need help.
Theresa S Story 3 years old My name is Theresa Hildebrand, and I have Parry Rombergs syndrome.I have posted some pictures of me growing up, in the hopes that it will help http://www.geocities.com/HotSprings/1018/personal_stories/Theresa/theresa.html
Extractions: Please be advised that everyone's experiences may be different and appropriate treatments may vary. Any medical information that you find on The Romberg's Connection website must NOT serve as a substitute for consultation with one's personal physicians. Our visitors should discuss any specific questions or concerns they may have about Rombergs with health care professionals who are familiar with the specifics of their special case. This is my 6th grade school picture from when I was 11 years old. You can see better how my right eye seems to be back further than my left eye. Also the atrophy on my chin is getting darker. The indentation of my forehead is also more pronounced at this point. I picked out these glasses myself. My older sister Susan got mad because I got the same ones that she had. Aahh ! - The Seventies ! This isn't a very good picture, but you can see how the indentation on my forehead travels upward. I was around 13 years old when this picture was taken. As I find more pictures, I will get them scanned and posted on my page. Most of the pictures that I have, I am turning my "good side" to the camera. Really makes me wish I didn't destroy so many pictures of myself over the years.
Sherree's Story My name is Sherree and I have Parry Romberg syndrome, most of you have never Parry Rombergs is also called hemi facial atrophy . Parry Rombergs is a http://www.geocities.com/HotSprings/1018/personal_stories/Sherree/sherree.html
Extractions: Please be advised that everyone's experiences may be different and appropriate treatments may vary. Any medical information that you find on The Rombergs Connection website must NOT serve as a substitute for consultation with one's personal physicians. Our visitors should discuss any specific questions or concerns they may have about Rombergs with health care professionals who are familiar with the specifics of their special case. June 23, 2005 My name is Sherree and I have Parry Romberg Syndrome, most of you have never heard of the name. Parry Romberg Syndrome is a very rare syndrome. Only 500 people in the world have been diagnosed with it. Parry Rombergs is also called "hemi facial atrophy". Parry Rombergs is a pathological process involving progressive wasting of the skin, subcutaneous fat, muscle and occasionally bones of the face. It was first discovered by Parry in 1825 and by Romberg in 1846. Eulenburg described the entity as progressive facial hemi atrophy in 1871. The onset is slow and progressive and begins usually during the first two decades of life, more often between the ages of 5 and 15. The progression of atrophy usually lasts from 2 to 10 years, following which the process seems to enter a stable or burn out phrase. There is no cure and no treatment for this disease. Only a multitude of surgeries for different parts of the affected areas.
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Burn Support Groups Database To contact my friend Theresa s group, email or link. Auntie_5@hotmail.com;Rombergs@hotmail.com; Link to the Parry Rombergs syndrome web site in the USA http://www.burnsupportgroupsdatabase.com/files/south-af.htm
Burns/Disfigurement Etc. Support Group Database all they have is each other. Contact Theresa s group, email or link.Rombergs@hotmail.com Link to the Parry Rombergs syndrome web site in the USA http://www.burnsupportgroupsdatabase.com/files/australi.htm
/Health/ConsumerSupportGroups/FacialDifferences/Parry The Rombergs Connection is an international support group made up of over 130individuals and families whose lives are affected by Rombergs syndrome. http://209.223.178.10/dir/$/Health/ConsumerSupportGroups/FacialDifferences/Parry
Electricbrain Home Index Health Consumer Support Groups Facial The www.electricbrain.com server is an experimental accuracy and authority checkerfor all Web content in any subject area. This server employs the Resource http://www.electricbrain.com/index/Health/Consumer_Support_Groups/Facial_Differe
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