The 1998 Romberg's Connection Guestbook

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53) 12/31/98 13:59:01
Name: Lesa
Location: Newfoundland, Canada
E-mail:
Comments: Special thanks to Terry, Marilyn and all the Romberg Clan for welcoming me into the family. Happy New Year and Happy Health for 1999!

52) 12/26/98 15:57:43
Name: Doris
Location: Chicago, IL USA
E-mail: d-klinkhamer@uchicago.edu
Comments: Until a year ago, at which time I was diagnosed with Rombergs, I thought I had scleroderma. For many years I often wondered why my experiences with "scleroderma" seemed so different from others who had been diagnosed with this disease. Now I know why. Finding this web page represents the first time I have felt a sense of connection with this disease. Thank you.

51) 12/17/98 22:00:12
Name: Dr Caragh
Location: Peebles, Scottish Borders Scotland
E-mail:
Comments: Amazing! I knew nothing about this syndrome and could find nothing about it before visiting your website. Am now going to give the name of your self-help group to my patie

50) 12/17/98 21:36:25
Name: Linda
Location: Ft.Lauderdale, Fl., USA
E-mail: linda.d.brink@mci.com
Comments: What a great find! Can't wait to hear from others with the same condition.

49) 12/16/98 19:24:17
Name: Patricia
Location: Cotati, Ca USA
E-mail: Sentra@Goplay.com
Comments: Hi--I am Laura's Mom (next message) if anyone cares to help me help Laura I'd love it!! Thank you. patty

48) 12/16/98 18:56:09
Name: laura
Location: cotati, ca usa
E-mail: charlie311@goplay.com
Comments: Hi I am a 14 year old who is getting my surgery for Parry Rombergs this coming summer (1999) & I am scared. Any help? Any Advise? Thank you

47) 12/15/98 17:46:53
Name: Jacqui
Location: Bournemouth, Dorset U.K.
E-mail: jacqui_damant@hotmail.com
Comments: Have suffered from hemi-facial atrophy since about 7 years old, am now 28. Have only recently discovered what it is that I am suffering from and have undergone facial and plastic surgery to improve my appearance.

46) 12/12/98 03:31:10
Name: Wanda
Location: Wisconsin
E-mail:
Comments: I was surprised that you did not have a description of what Parry-Rombergs Syndrome was on your Parry-Rombergs Syndrome Information page but had to go beyond your homepage to find out.

45) 12/10/98 17:17:19
Name: Susan, M.D.
Location: Waterloo, IA USA
E-mail:
Comments: Marilyn shared this web page address with me--thanks for sharing your life stories. I'm glad to be better educated about this syndrome. Merry Christmas, everyone.

44) 12/10/98 00:52:15
Name:
Location:
E-mail:
Comments:

43) 12/08/98 07:11:26
Name: Theresa
Location: Chicago
E-mail:
Comments: The correct e-mail address to contact Sandy with is...RichGreist@aol.com
Sorry for any inconveniences..

42) 12/06/98 03:19:40
Name: SanDee
Location: Norristown, Pa Mongtomery
E-mail: ol@RichGreist
Comments: I have had this problem since birth and would like any one who can offer support and information to please contact my Friend at Aol Rich Greist, he will send and receive messages for me untill I can get a computor.

41) 12/04/98 03:39:15
Name: Sherry
Location: NJ USA
E-mail: jsburns@gateway.net
Comments: This is wonderful! I have never met anyone with Rombergs. It is so comforting to be able to share stories, information, and feelings. I was diagnosed with Rombergs when I was 15. It affected the left side of my face. I was fortunate to find a plastic surgeon in NYC who correctly diagnosed the condition and began treating it with collagen injections. After several years he read about doing liposuction and injecting the fat into the cheek. I had this done when I was 21 and the fat remained until the age of 31, when I noticed my face "sinking" again. I have since gone back for 1 more liposuction and injection treatment and plan to go back again. I would be interested to hear if anyone else has had this procedure and their results. I would also be glad to share any information I have obtained. Thank you to everyone who has shared their stories. It is so comforting to know that others share your feelings.

40) 11/23/98 20:40:22
Name: Audrey
Location: Chicago, Illinois United States
E-mail: Karabats@ncook.k12.l.us
Comments: Dear Theresa, I heard that you were trying to contact me. I had a slip of the finger on our last entry in the guest book and put a period in my email address that didn't belong. It is now correct when you click on email! Sorry for the inconvience, Sandra

39) 11/18/98 17:14:51
Name: Audrey
Location: Chicago, Il. United States
E-mail: Karabats@n.cook.k12.il.us
Comments: Hello, I am SO glad to have found you. After years of unanswered questions, it is a relief to have found this connection. I am writing for my sister, Audrey who has this sydrome, she has it double bilateral in her face, through out her body and more. She would love to talk with people who share this same disease. She though does not have a computer, but you can contact her through myself or we can set something up through mail. Thank you so much and awaiting your mail, Sandra

38) 11/18/98 16:17:16
Name:
Location:
E-mail:
Comments:

37) 11/12/98 04:37:32
Name: Nancy
Location: Winnipeg, MB Canada
E-mail: iriabbas@aol.com
Comments: Romberg's Connection is probably the most finest example of how humanity will be enhanced by the new information age we live in! I am truely moved and deeply touched by depth of human feelings involved ... my initial thoughts are on the wonderful contributions that can be made by you and your loved ones. To Theresa, a most gracious thank you for your invaluable insight and assistance. I will keep in touch!

36) 10/16/98 12:37:16
Name: Theresa
Location: Chicago, IL USA
E-mail: auntie_5@yahoo.com
Comments: Adele,
I'm so glad that you found us !! If you need to set up an free e-mail address for yourself, go to our free e-mail page for directions. In the meantime, I will be including you amongst the members of our Rombergs "family."
We hope to hear from you again sometime soon. Once again...Welcome !!!

35) 10/15/98 15:13:36
Name: adele
Location: staten island, new york usa
E-mail:
Comments: I am crying with joy to see I am not alone. This crazy search of mine just might be coming full circle at last. I am looking for others that I can relate to and most definetly identify with. Seeing some of the photos is like looking into my own mirror. I am still trying to master the computer so I will try to call your connections soon for more information. Thank you and God Bless you all.

34) 10/13/98 13:01:14
Name: Elizabeth
Location: Dar es Salaam Dar es Salaam Tanzania
E-mail: etwininge@usaid.gov
Comments: I am a mother of a 7 year old boy who was diagonized with parry romberg syndrom 2years ago and he has since then lost his eye and half his face is deformed. He had an operation to remove the damaged eye about 2months ago and now he is with an artificial one. Meanwhile the bald-patch on the side of his head is growing bigger and more pronounced with time. From here, we do not know what to expect next except wait and see....

33) 09/21/98 01:16:49
Name: Carmen
Location: Chicago, Il
E-mail: deleon@uic.edu
Comments: I also happen to have HFA. I'm glad to see that people are in touch, and if there is anything I can help with...just let me know.

32) 09/18/98 17:08:29
Name: Tracy
Location: Mooresville, NC USA
E-mail: tracing30@aol.com
Comments: I mistyped my email address in the previous entry. Please excuse my mistake. I would like to receive email giving me advise about my daughter. It is very difficult for me helping her to cope. Children and even some adults can be so cruel. How can I help boost her self esteem? She just started Kindergarten this year. She will be six in December. Learning this has been very devasting for me. I need guidance to help my daughter and myself. Thanks! Tracy

31) 09/18/98 16:55:16
Name: Tracy
Location: Mooresville, NC USA
E-mail: tracing30.aol.com
Comments: My daughter, Lorin, is five years old and was diagnosed this past April. My parents have spoken with many of you, (Pat and Ed of Marietta Georgia.) So far we are taking medication but I cannot see any improvement. She has bad headaches and has had two seizures. Please e-mail me with any encouraging remarks!

30) 09/17/98 17:51:37
Name: Rosemary
Location: Warrington, PA USA
E-mail: hanknro@erols.com
Comments: Just located your site and wish it was around several years ago. Our daughter, Kristen, was diagnosed with Romberg's when she was 13 (after several doctors and hospitals couldn't find a thing!) by a Maxillofacial Specialist, Dr. Linton Whitaker at Children's Hospital of Philadelphia. Her Neurologist, Samuel Tucker at CHOP, referred her to Dr. Whitaker. After three surgeries, Kristen seems to be fine, except for the headaches that remain and having to stay on medication for seizures that started when her Romberg's was noticed. Thanks for the info - Kristen is 21 now, and I will pass this site along to her for her own information.
RL

29) 09/17/98 08:24:49
Name: Emily
Location: Anaheim, CA USA
E-mail: emily@nedrac.com
Comments: I have had this condition as far back as I can remember, and yet never met anyone like me before. I never knew what this condition was called until 4 years ago, (late 1993) my right cheek suddenly looked like it had atrophied down to just skin and bone. Fortunately, the condition did not seem to have affected my muscle or bone structure. In early 1994, a wonderful plastic surgeon in Fountain Valley, CA, was able to help by performing 2 procedures of fat injections in April and July of the same year. Although I was warned that the fat may be reabsorbed within months, it is now 4 years since the procedures, and so far most of the fat is still there. I must say I really don't know much about this disease except that the hurt it inflicts on one's self esteen is far greater than the physical damage. I am glad I finally found this web site and support group. If there is anything I can do to help someone else, please e-mail me.

28) 09/16/98 21:08:10
Name: Lori
Location: Buffalo, NY USA
E-mail: lrosenbe@apicorporate.com
Comments: I am a 35 yr old female and have lived with Romberg's syndrom since I was 5yrs. No one knew at that time what it was and it is very amazing to me that there are others out there that have the same condition. I have always felt insecure about my appearance and have "hidden behind my hair" my entire life, I would love to talk to someone who knows how I feel.
Lori

27) 09/03/98 12:50:12
Name: Hannah
Location: St. John's, Newfoundland Canada
E-mail: whiffen@roadrunner.nf.net
Comments: Hi! I have a sister who was diagonised with Romberg's about 16 years ago. It affected the right side of her face and she has had three surgeries. Everything was fine up until now, she is in hospital with seizures which doctors say is coming from the Romberg's disease. Would like some information on the full disease, I am new to e-mailing and would like some help in finding out what is really going on with my sister.
Hannah

26) 09/02/98 23:15:18
Name: Rick
Location: NH
E-mail:
Comments: After reading peoples' stories and the information provided at this site, I'd have to say that I have Parry-Romberg Syndrome (left-sided coup de sabre that runs from above my eye into the middle of my skull, thinner bone in the affected areas of my skull and cheek, less elasticity and discoloration in the skin around my affected eye, localized loss of some hair in my scalp and eyelashes, etc.), although not as severe as most of these. No doctor has ever mentioned the P-R Syndrome label to me. Thanks for your work in pulling together all this information. (My wife accidentally came across some P-R material on the Internet and immediately recognized its relevance to my condition.)

25) 08/26/98 13:38:53
Name: Maria
Location: Fairborn, OH USA
E-mail: cruzms@hotmail.com
Comments: Just stopping by to see what's new. The last time I visited, I did not have an email address. I do now. My story is long, but very similar to some of the ones I've read about. I recently had back surgery and had not been able to visit the site. I was wondering if anyone has had some sort of spinal problems in conjunction with Romberg's. I have several herniated disks and quite a few bulging ones. This was revealed when I went to have surgery for a particular disk that had herniated and discovered that I had another disk needing immediate attention. (I did not know about this one). The doctor felt this disk was more dangerous since it was compressing my spinal cord and I could have become paralysed at any time. I asked the doctor if there was any correlation between the bulging/herniated disks and Romberg's but he did not know (he's a neurological surgeon). Anyway, if anyone has had a similar problem, please let me know what your experience has been.

24) 08/14/98 01:57:11
Name: Kate
Location: Orange, CA USA
E-mail: kate102@earthlink.net
Comments: I was diagnosed with having hemi-facial atrophy and en coup de sabre in 1952. I have a similar history as many of yoy who shared your stories. I am delighted to have found The Romberg Connection. Please add me to your list. I would love to meet with you and relate.

23) 08/03/98 23:27:51
Name: Martin
Location: Youngtown, Arizona USA
E-mail: mdittemer17@hotmail.com
Comments: I just started looking for things on the web two weeks ago. Rombergs was one of the first because of the lack of information from the many doctors over the years. I first notice something when I was 17--back in 1944. One doctor, I met in 1951, made a study of the codition while in medical school, but gave me no name. I finally met a doctor in 1988 that knew what it wa and named it for me. ( I was now 61) I stopped seeing him becaus of the way he ---displayed me ----- . After the first visit, for an arthritis condition, the next visit he would have a new aide. He would do what ever and then ask the aide if he notice anything, then stand back with a silly look on his face. The poor aide would then just stare at me, not knowing what to look for or what the doctor wanted. After the second time I never saw that doctor. This is too much for now. I will say mor some other time. Marty

22) 07/29/98 21:48:34
Name: Marilyn
Location:
E-mail:
Comments: To Linda B., I tried to send you an e-mail. Please check your e-mail address and I'll try again. Thank you!

21) 07/27/98 01:53:07
Name: Linda
Location: Howey, FL USA
E-mail: ANDND@AOL.com
Comments: I was looking for information on the internet concerning Romberg's syndrome because I have had the syndrome for years and have not been able to find any information on the subject. Just figured I'd say hi and let you know I saw the page! Feel free to e-mail me if you like. Have a nice day, Linda

20) 07/11/98 21:08:56
Name: om sabel
Location: spencer, Ia. 51301
E-mail:
Comments: I would like to hear from anyone with this disorder. My street address is 18 1/2 4th str. SW, Spencer Ia. 51301. My case is somewhat unique because I have atrophy of the right leg that seems to be rare for this disorder. I also have the usual facial atrophy on my left side. I am interested in hearing from medical researchers who can shed light on how much worse this will get. I am 44 years old and have symptoms as old as 15 years and possibly since birth. I would even be willing to release my medical records from the Mayo clinic and University of Iowa Hospital if need be. Thank you, please write.

19) 06/16/98 21:34:22
Name: marianne
Location: Biri, oppland Norway
E-mail:
Comments: hello...... Since i have Rombergs syndrom,I found this very interesting.

18) 06/12/98 21:15:57
Name: Torbjorn
Location: Kristiansand, Norway
E-mail: tobotn@online.no
Comments: Three years ago our youngest son was diagnosed localized schleroderma and was treated with cortisone for a period of 7 months. This seemed to end the development of the decease. At our latest consultation the diagnose was changed to Romberg. We are now entering a stage were spesialist are trying to decide what to do in order to increase the growth of his left chin and cheek.

17) 06/12/98 20:46:30
Name: Torbjorn
Location: Kristiansand, Norway
E-mail: tobotn@online.no
Comments: This is my first entry at your pages so this time I will just say hello.I`ll be back.

16) 06/05/98 02:11:53
Name: Jon, M.D., M.P.H.
Location: Newport Beach, California USA
E-mail: mdjmg@aol.com
Comments: Please let me introduce my self. My name is Jon M. Grazer, M.D., M.P.H.,I am a plastic surgeon in Newport Beach California. I have a patient that has Rombergs Disease that we have done extensive reconstruction including free flaps and fat grafting.

This gentleman is in his early forties, and has never met another person with the same problem. He is very interested in getting involved with a support group, and hopes he could provide some insight to younger people with similar problems.

I also would like to work with him in being able to help reconstruct patients with this problem. I would be most apprecieative if you could provide me with support group information. My E-mail address is mdjmg@aol.com and my office number is 949-644-120.

Sincerely yours,

Jon, M.D.

15) 05/12/98 06:57:05
Name: Tammie
Location: vermont
E-mail: tammie.degrasse@dartmouth.edu
Comments: I too, have Romberg's disease. It was very helpful to read your web page and see that I am not alone! I'll keep checking in periodically. Thanks, Tammie

14) 05/06/98 04:00:41
Name: WENDY
Location: MONROE, WISCONSIN USA
E-mail: JJEWRE@UTELCO.TDS.NET
Comments: I'M GLAD I'M FINALLY GETTING CONNECTED WITH PEOPLE WHO ARE DEALING WITH THIS SYNDROME I HAVE BUT KNOW SO LITTLE ABOUT!

13) 04/29/98 03:43:57
Name: PAT and ED
Location: Marietta, GA USA
E-mail: PAI519@aol.com
Comments: Thank you for your web site. Our beautiful 5 year old grandaughter,Lorin, has just been diagnosed with Parry Romberg's Syndrome with limear scleroderma. We are still in shock. We have turned to your web site for information and encouragement. We are now looking for a physician in the Southeast experienced in working with small children to examine Lorin and confirm the diagnosis. If you know of a physician who has experience in Parry Romberg's Syndrome, please let us know. We appreciate any assitance and prayers. May God bless you.

12) 04/19/98 20:41:15
Name: Martha
Location: Columbus, Georgia USA
E-mail: MarthaLut@aol.com
Comments: Dear fellow Romberg's vets, wow...I thought I was the only one. I have have been fortunate to have had adult onset(24), and only 10 years to find a diagnosis, fablous doctors from all over the globe, and very good health insurance. I wish you all well, and would be happy to share experiences, and Dr's names, cities, and countries. My complications have been very mild compaired to the stories that I have been reading on this page. Keep the faith dear friends, we shall be made perfect in the next world.

11) 04/15/98 23:37:51
Name: Dennis
Location: Pennsauken, NJ USA
E-mail: ndperry@aol.com
Comments: Many thanks to everyone who has contacted me since I was diagnosed in November. I have found your support to be uplifting. I have found a doctor at the University of Penn. who has treated people with Rhombergs. I am having fat injected into my cheek area this June. Hopefully this will be the only thing that I'll need to get done. My hope is that the atrophy has stopped.

10) 04/02/98 17:56:14
Name: Mike & Donna & Sarah
Location: London, Ontario Canada
E-mail: mdekleyn@lon.ionline.net
Comments: A relief to find some information on Rombergs since our daugter, Sarah was diagnosed with it a year ago at age 4 We are just WOW'ed with all this info and stories

9) 03/15/98 07:47:37
Name: Dan
Location: San Jose, California USA
E-mail: dangre@juno.com
Comments: First, a big 'Thank You' to everyone involved in this site. It is going to take some time to digest all the information, but after that I will be in contact with you and offer my help in any way possible. My wife, Paulette, has Rombergs. She underwent experimental treatment at UCLA where they injected Silastic into her cheek. Anyone else had this procedure? If it is any help to anyone else out there, she is the most beautiful woman I know and we just celebrated our 28th wedding anniversary.
dangre@juno.com
dangre@ihot.com
dgrebinski@ci.santa-clara.ca.us

8) 03/12/98 19:06:59
Name: Maria
Location: Fairborn, OH USA
E-mail:
Comments: I was totally surprised to see what I've just seen! I had no idea there were so many other people with something I've lived with for the past 36 years. To be honest, I thought I was the only one. I have never seen another person who may look as I do. I have always felt there was not another soul out there experiencing what I have. I would like to correspond, but alas, I do not have a home PC. I am at work and during my lunch break I thought I'd take a look. I'm so glad I did. Thanks to the caring individuals who thought enough about others to get this started. Thank you, thank you, thank you!

7) 02/28/98 18:21:54
Name: JAYNE
Location: ADELAIDE, AUSTRALIA
E-mail: jayn7@hotmail.com
Comments: I AM IN THE EARLY STAGES OF BEING DIAGNOSED WITH ROMBERGS.I AM 28 YRS OLD.I HAVE YET TO UNDERGO THE CT SCANS AND OTHER INVESTIGATIONS BUT UNDERSTAND THAT MY CONDITION IS REASONABLY MILD AT THIS TIME.MY MAIN SYMPTOM IS LEFT SIDED FACIAL ATROPHY.

6) 02/19/98 19:43:39
Name: Pat
Location: Fort Dodge, Iowa U.S.A.
E-mail: phindman@iastate.edu
Comments: Thanks for being here. I've known about 3 other people like me. I've met one of them. It sure is nice to know there are others.

5) 02/09/98 20:56:54
Name: Charles
Location: South Africa
E-mail: Charles@netactive.co.za
Comments: My daughter aged 9 has just been diagnosed as Parry Romberg. I need help as to cure??? or any other remedial solutions

4) 02/08/98 00:09:55
Name: Gail
Location: Maryland
E-mail: GailIvy@aol.com
Comments: I found this group some weeks ago, but wanted to take this time to echo the thoughts of other members of the group, and Romberg Connection visitors, in expressing my appreciation to the folks who had the iniative to start the group and who put in the time and effort to maintain the Web site. I have communicated with some of you, and greatly appreciate your responses.

3) 01/26/98 22:21:51
Name:
Location:
E-mail: lapudge@aol.com
Comments: I would like any information on rombergs. I have rombergers and it gets harder and harder each day to look in the mirror. I've read people's stories and it's like I am reading my own life story. I need some help.

2) 01/05/98 12:28:29
Name: Clare
Location: Houston, Texas USA
E-mail: DEZZIE7@aol.com
Comments: I want to wish everyone a Happy New Year,and all the best in 1998. Thank you all so much for this web page, I know it takes a lot of time and work to do this. You guys gave me new hope and tons of comfort in 1997 when I found you. I know my appreciation for all that you do is felt by all of us in the group. God bless you. {{{Group Hug}}} Love to you all, Clare

1) 12/10/97 01:33:50
Name: Mary
Location: Wilmington, Delaware USA
E-mail: mec1118@aol.com
Comments: I am really happy to have found you! This afternoon when I ran an Alta Vista search on our very recently purchased computer, I expected, at most, to find a few clinical documents. I just about fell out of my chair when your home page began to serenade me with Christmas wishes! I'm 36 years old and was diagnosed with Romberg's when I was a toddler. The left side of my face and neck are affected. I had my first surgery when I was 5, and four more perations during my teen years. I'll look forward to corresponding with you.

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Last Updated March 5, 2014