36) 12/26/2002 at 19:58:54 GMT
Name: Dennis Location: San Antonio, Texas E-mail: email@example.com Comments: I went to the free clinic for a growth under my tongue. While there, I was told that it was a ranula (spell?) and could be removed surgically. I asked if they would be able to do this as I have a very limited (appromimately 3/4 inch) opening. An oral surgeon was brought in and after a series of "uh huhs" and "hmmms", he asked if I would consent to panarax exray. I agreed and afterwords went home. I was contacted a few days later and an appointment was set-up for me to return. I was shown my "pictures", asked a series of questions,and my face was manually examined. More "uh huhs" etc. The doctor asked if I had received any trauma to my jaw and I told him that to my knowlege but I was diagnosed when 3 or 4 with polio. My mother told me of the hours spent in therapy and I could definately rember the ugly shoes I had to wear. This was in 1954. I was informed that I might have endured Perry Romberg syndrom rather than polio and have since undergone impressions of my teeth and an MRI. I am next scheduled for an appiontment with a dermotoligist on Jan 7th. My son searched the web and it was he who told me about this website. I will keep you posted on any future results and.or findings.
35) 11/24/2002 at 17:06:29 GMT
Name: Marilyn Location: E-mail: firstname.lastname@example.org Comments: Antonio Trabanino, Please contact us again. I do not have an e-mail address to write to you. Thanks.
34) 11/09/2002 at 00:41:37 GMT
Name: Marilyn Location: E-mail: email@example.com Comments: Jann, If Rombergs is a part of your life, or someone that you care about, please write to us again. We would be glad you welcome you in to our group.
33) 11/08/2002 at 20:42:00 GMT
Name: Janne Location: Norway E-mail: Comments: I have lesrn much about Romberg today Thank you
32) 10/27/2002 at 00:45:36 GMT
Name: Greg Location: E-mail: firstname.lastname@example.org Comments: Dear Terry, It has been awhile since I have written to you. I am busy as heck with work right now. I am also in the process of writing a book, so most of my time is taken up. I am counting down the days until ski season and I can hardly wait. Well, it's almost Halloween again. Remeber the great times we used to have? It's been almost 3 years now since you passed away and I still miss you with all my heart and soul. It's really hard to lose your best friend. There is no one in my life that is like you were. I never had to wonder if there was someone that liked the things that I do. I grew up with that someone. I hope god knows what a wonderful person you are. I'm sure he knows it even better than I did. I miss you Terry.. All my love, Your little brother, Greg
30) 08/28/2002 at 13:20:38 GMT
Name: Dylan Location: Innisfail QLD Australia E-mail: email@example.com Comments: I am 8 years old and have Parry Romsberg syndrome in my right arm and chest.It first started when i was 4 years old,just wondering if there is anyone that has the same case as me. Dylan
29) 08/24/2002 at 12:36:49 GMT
Name: Dom SY Location: Singapore E-mail: firstname.lastname@example.org Comments: Dear Kelley, I read your story in the Rocky Mountain News and I was very saddened to hear about your condition. However, I am certain that God loves you, and will never leave your side til the day that you will be re-united with Him in perfection and strength. I pray that you will look to Him always for the strength that will buffer you against the world, for it will protect you and your faith and trust in Him will enable you to stand firm and rooted in Him. I pray that your journey on this earth will teach you the greater things in life and the things that are important to you and your decision to make those important things to you, truly important and priorities in your daily life. I pray that even as God shows you the way to walk on earth, you will store up your treasures on heaven with you actions and your deeds, and your strength to face and overcome your condition will be a overgoing testimony of God's neverending love and all-encompassing mercy for all who have come to trust Him in their daily lives. I pray for you, remain strong in Christ, love Him the most, and He will make your paths straight. (Pro 3:5-6) In God's love and mine, Dom.
28) 08/09/02 at 05:10:29 GMT
Name: Sam Location: NY E-mail: email@example.com Comments: 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,
27) 07/15/02 at 19:52:51 GMT
Name: Henry Location: Jerusalem, Israel E-mail: firstname.lastname@example.org Comments: 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
26) 07/07/02 at 02:38:32 GMT
Name: Dave Location: New Mexico E-mail: email@example.com Comments: 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
25) 06/18/02 at 20:24:40 GMT
Name: June Location: Ann Arbor, MI USA E-mail: firstname.lastname@example.org Comments: 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
24) 06/16/02 at 05:00:59 GMT
Name: rosa Location: USA (California) E-mail: email@example.com Comments: 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
23) 06/12/02 at 20:50:20 GMT
Name: Ricardo Location: Monterrey, Mexico E-mail: firstname.lastname@example.org Comments: 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
22) 05/31/02 at 22:24:27 GMT
Name: Joseph Location: Yuma, Arizona E-mail: email@example.com Comments: Just sitting here with Sherree Wakefield, who had me open this site - to learn more about this syndrom. Thank you very much Joseph
21) 05/15/02 at 17:44:42 GMT
Name: Greg Location: E-mail: firstname.lastname@example.org Comments: 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
20) 05/05/02 at 22:15:53 GMT
Name: Greg Location: E-mail: email@example.com Comments: 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
19) 05/03/02 at 03:50:40 GMT
Name: michael Location: E-mail: firstname.lastname@example.org Comments: 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.
18) 04/30/02 at 00:27:28 GMT
Name: Evelyn Location: St. Louis, MO E-mail: email@example.com Comments: 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.
17) 04/28/02 at 16:58:08 GMT
Name: adele Location: E-mail: Comments: Dear Terry, Your in the arms of the angels. Happy Birthday. Love, Adele
16) 04/22/02 at 21:35:37 GMT
Name: Cindy Location: NJ E-mail: firstname.lastname@example.org Comments: 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.
15) 04/21/02 at 02:41:43 GMT
Name: kim Location: E-mail: email@example.com Comments: 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
14) 04/08/02 at 21:44:57 GMT
Name: Brad Location: Friedberg, Germany E-mail: A_Train710@hotmail.com Comments: 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.
13) 04/08/02 at 08:41:48 GMT
Name: Craig Location: South Africa E-mail: firstname.lastname@example.org Comments: Hey guys. It's been a while since I was in touch. My email address has changed from email@example.com 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
11) 03/27/02 at 19:52:21 GMT
Name: Flavia Location: Chicago,IL E-mail: firstname.lastname@example.org Comments: 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.
10) 03/24/02 at 08:37:03 GMT
Name: Sylvie Location: England, Somerset E-mail: email@example.com Comments: hello someone .I am 12 and have Rombergs. I want to put my story on this site but don't know how.
9) 03/19/02 at 01:47:44 GMT
Name: K. Location: U.S.A E-mail: firstname.lastname@example.org" Comments: I've learned quite a bit about this condition from your websight. Keep up the good work!
8) 03/18/02 at 04:51:29 GMT
Name: jennifer Location: E-mail: email@example.com Comments: 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.
7) 03/09/02 at 23:16:00 GMT
Name: Crystal Location: Indianapolis E-mail: firstname.lastname@example.org Comments: 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
6) 03/03/02 at 06:50:10 GMT
Name: Maria Location: Baltimore, Maryland E-mail: email@example.com Comments: 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 firstname.lastname@example.org. Thanks, Maria
5) 03/01/02 at 11:22:06 GMT
Name: Gwen Location: E-mail: email@example.com Comments: 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.
4) 02/05/02 at 16:08:29 GMT
Name: Maria Location: Michigan E-mail: firstname.lastname@example.org Comments: 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
3) 01/20/02 at 07:46:36 GMT
Name: Ruth Location: Oklahoma E-mail: email@example.com Comments: 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!
2) 01/11/02 at 14:35:37 GMT
Name: Pat Location: Iowa E-mail: firstname.lastname@example.org Comments: Marilyn, Please contact me. Need to chat with you. Thanks.
1) 01/03/02 at 04:44:38 GMT
Name: carey Location: bangs texas E-mail: email@example.com Comments: 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
Location: San Antonio, Texas
Comments: I went to the free clinic for a growth under my tongue. While there, I was told that it was a ranula (spell?) and could be removed surgically. I asked if they would be able to do this as I have a very limited (appromimately 3/4 inch) opening. An oral surgeon was brought in and after a series of "uh huhs" and "hmmms", he asked if I would consent to panarax exray. I agreed and afterwords went home. I was contacted a few days later and an appointment was set-up for me to return. I was shown my "pictures", asked a series of questions,and my face was manually examined. More "uh huhs" etc. The doctor asked if I had received any trauma to my jaw and I told him that to my knowlege but I was diagnosed when 3 or 4 with polio. My mother told me of the hours spent in therapy and I could definately rember the ugly shoes I had to wear. This was in 1954. I was informed that I might have endured Perry Romberg syndrom rather than polio and have since undergone impressions of my teeth and an MRI. I am next scheduled for an appiontment with a dermotoligist on Jan 7th. My son searched the web and it was he who told me about this website. I will keep you posted on any future results and.or findings.