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I have a cute little sister 6 years old, what has Parry Romberg, She went to at least 10 doctor's no body new what it was, till finally one doctor told us what it is,She had already one surgery, was told to come back for another one when she is around 12 years old, Because then she will be devloped more, I would like to no if her face will ever be the same, after having surgery again? I would do anything for here that she should look good [cute] again.Does any body no of a Specialty doctor, who is only involved in this? Please e-mail me. I have no words for the person who made this site, I hope every body will feel great, and look good again,

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Needless to say, I'm interested both as a practicing physician and as a Romberg in all signs and syndromes bearing my name. No, I'm not related to the original Romberg (?Gisbert von Romberg. Keep up the good work. Henry MD

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I was diagnosed with Rombergs Disease when I was 9 years old. Am trying to locate a doctor that did liposuction surgery to replace fat cells in my face when I was 13 (this would have been in 1983) He was in Houston TX at the time. I think his name was Arguses or something like that. If you could help me locate this doctor I would greatly appreciate it. Thanks

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Hi Everyone, What a wonderful website to find! I have had Parry-Romberg for at least 5 years (although a line from my forehead to my chin has been there for about 15 years) but I was diagnosed yesterday. You all seem to be such a lovely, supportive bunch. What I was wondering is, have any of you tried physical therapy or yoga for pain management?
I have been to a physical therapist for 3 weeks, while doctors were doing all kinds of tests. The therapist gave me many facial exercises. Although we don't think it can help prevent the atrophy, it seems to do wonders for the pain. re: MRIs is the brain damage on the same side as the atrophy? Mine is... Thanks for this site! Best wishes to you all!!! June

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Hello everyone-- Didn't know there was a website about romberg's. Our 12-year old daughter, Valerie,has hemifacial atrophy(coup de sabre) and uveitis since age 6. We'd be happy to hear from anyone with similar problem and if there are any new treatment recommendations. Thanks, Rosa

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I think its great what you do; I´m an Orthodontist and I´m very interested in the syndrome because I have two patients with that. I appreciate your information

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Just sitting here with Sherree Wakefield, who had me open this site - to learn more about this syndrom. Thank you very much Joseph

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Terry, I hope you know how much you are missed. A lot of people are writing me today to let me know how much they still miss you and love you. It was 2 years ago today that you passed away, and the memory of it still feels like it just happened. You were a great man Terry, I am reminded of it with every memory. There are so many things in life that I still wish I could share with you. So many things that I would love to talk with you about. I have never been a strong believer in God. I always felt like it was a sign of weakness somehow. Then you passed away and it made me start having to believe in it. I guess I feel like it's my only hope of seeing you again. So, it has to be real. I miss you buddy. I am going to Minnesota again in a few weeks. I will visit the giant Otter at the lake and remember when we were there just a few years ago and had our picture taken standing on its head. Then how we went out for a beer together after that. Sometimes its hard to be here without having you around to share life. You were my best friend Terry. The one thing that ever truely made me feel like I was a part of something. I miss you!!!!!!!!!!!!!!!!!!!!!!!!!! All my love, Your little brother, Greg

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Dear Terry, I just wanted to get online and say Happy Birthday to you. I wish there was some way to let you know how much I love and miss you. There is never a day that goes by that I don't think about you. Well, the big event happened. Spider-Man was released. How long was it that you and I waited for that? Years and years. I know it was stupid, waiting for a cartoon charachter movie to come out, but..,It was fantastic. It finally came out may 3rd. 2002. Almost 2 years after you died. I was there opening night, wishing to god that you were with me. Well, if we hold true to passing on at the same age that would mean I would pass away in 17 days. Man, I wonder sometimes if you had any clue? I know I had no clue or I would have been there. I miss you Terry. I know God has you now, but I wish he chose someone else for company. I love you and I am waiting to see you again. You have my heart.. All my love, Your little brother, Greg

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Hi. i have rombergs disease. my face has lost fat in the left side. i am 45 years old and it started to show up when i was about 2 years old. i have an identical twin who does not have it. know anyone who would like to do a study on this disease to see if it is genetic. i would like to find out why this disease is.

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I am 41 years old and was only given the Romberg diagnosis about a month ago, although I've had it since I was 5 years old.

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Dear Terry, Your in the arms of the angels. Happy Birthday. Love, Adele

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Has anyone ever heard of a parent and child who both had Romberg's? My husband has it, and my two-year-old son has a patch of white hair, which apparently is a warning sign. But I've never heard of parent/child connection before. Please e-mail me if you know o any. Thanks.

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hi! one of my best friends was diagnosed with parry romberg syndrome. i would like to be a support to her and have read a lot of information but is there anything else i can do or need to know? sincerely, kim

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I have just found out that my nephew has been diagnosed with Parry Romberg Syndrome. I have just found out about 20 minutes ago from my father. I am stationed in germany and have grown up with my nephews in the same house, so they are like my little brothers. I love them very much. I am scared because I read very little about the disease and from what I have read I am very troubled and visibly shaken. I just want to understand what is going on and what I can do to help. Thank you for your site and I hope to recieve more information on this disease.

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Hey guys. It's been a while since I was in touch. My email address has changed from skytronics@ncoast.lia.net to the above mentioned address (if you wouldn't mind changing it in my story please, Theresa). I have contacted a documentary show here in SA called Carte Blanche and made a recommendation for them to do a story on PRS. Hopefully the story of our lives will get some airtime and if so I'll definately let you know. Regards, Craig

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I just read the Kelly story, I am very touched by the courage of this little girl. I live in Chicago and would like to volunteer in any way possible to help this gilr and her family or anyone that suffer with this terrible - not studied desease.

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hello someone email me.I am 12 and have Rombergs. I want to put my story on this site but don't know how.

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I've learned quite a bit about this condition from your websight. Keep up the good work!

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My son, age 6, has Romberg's. Obviously, information is scarce. I would appreciate contact from anyone, especially concerning occurances that began with coup-de-saber or head injuries. Also, please share experiences or information including brain involvment, vascular involvment, skull atrophy, and eye problems. I appreciate your time.

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My son Bryan is 21 and has Rombergs. His started at the age of 8 and progressed most aggressively so fat between the ages of 13 and 21. Currently he is getting 3 treatments each week of UVA phototherapy. We are not sure if this is working or not. This is the 5th month of treatment and photographs are being taken periodically to assess any changes. So far, nothing much of a change, in fact maybe worse in the chin area. Has anyone else reading this ever experienced this type of treatment? Also, does anyone know what the spread of time for the disease progression is. A reconstructive surgeon at Mayo has asked us not to visit him until the disease has ceased for 1 full year. Any

03/03/02 at 06:50:10 GMT

Name: Maria	MY URL: Visit Me
My Email: Email Me	Location: Baltimore, Maryland

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I am a 20 year old college student that suffers from Parry-Rhombergs. I am interested in being apart of your connection. Please e-mail me if you ever want to discuss any problems. I have had a long struggle and am willing to share. my e-mail is mpb@pfeiffer.edu. Thanks, Maria

03/01/02 at 11:22:06 GMT

Name: Gwen	MY URL: Visit Me
My Email: Email Me	Location:

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Hi! my name is Gwen I'm 22 today my neurologist said he thinsk I have Parry Rhombergs I don't know what it is but this website looks great, so far its all the information I have. I don't think the neurologist knows much about Parry Rhombergs because he hasn't told me anything - just refered me to a professor. I live in Sydney and would love to hear from anyone else with this condition

02/05/02 at 16:08:29 GMT

Name: Maria	MY URL: Visit Me
My Email: Email Me	Location: Michigan

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I can't believe I found this site. I have or had Rhombergs Syndrome and was treated by Dr. Phillips and Dr. Sullivan as well as many others through out my childhood in the mid 80's and early 90's at Childrens Hospital in Detroit. (I am 20 now). I had two reconstructive surgeries done and had the option to do more, though they would be more for cosmetic purposes rather remedy for any health concern. Then my family moved north and I decided at 15 that if people couldn't accept me for how I looked, they weren't worth really worth my concern. I was also kind of tired of having something so rare that even well meaning doctors often made me feel like the rab rat freak show of the quarter. (Thoough I must say there were a LOT of wonderful, sensitive doctors out there) Why should I undergo massive surgery? That was my general train of thought then. I really haven't change my opinion much since then. Anyhow, the information of this condition is extremely limited.. I recall vaguely my mother coming up with some resources at the Detroit Public Library, but even then, it was very limited. Most of my knowledge comes from whatever mom can recollect from over a decade ago, so as you can imagine, I am very thankful for this site. I also wish encouragement and strength to those who may be struggling through this. I guarentee you will emerge stronger and with an appreciation for the deeper things in life. At least I have. Peace, Maria

01/20/02 at 07:46:36 GMT

Name: Ruth	MY URL: Visit Me
My Email: Email Me	Location: Oklahoma

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Hi everyone, My son age 10 is currently being "tested" for Rombergs. I would love to hear from any of you who have children with this or had this as a child. Also would like to know if any of you have had vascular or brain involvement from the Rombergs? Also any skull, bone problems from it. BLessings!

01/11/02 at 14:35:37 GMT

Name: Pat	MY URL: Visit Me
My Email: Email Me	Location: Iowa

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Marilyn, Please contact me. Need to chat with you. Thanks.

01/03/02 at 04:44:38 GMT

Name: carey	MY URL: Visit Me
My Email: Email Me	Location: bangs texas

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i have an 11 year old son with this disease, he was diagnosed when he was eight. i havn't looked back into this in a while. I hope i can find new info. maybe i can comfort his life somehow. thank you, carey