94) 12/27/00 02:21:03
Name: Craig Location: Durban, Natal South Africa E-mail: firstname.lastname@example.org Comments: I am deeply saddened to hear of the loss of an inspirational man. My thoughts and prayers go out to family and friends. Also just to let you all know that I have returned from my travels and now have a new email address: email@example.com - please up
Name: dana Location: ohio, usa E-mail: Comments: you guys are beautiful,brave and so friendly to share your stories you touched me deeply!
Name: Greg Location: E-mail: firstname.lastname@example.org Comments: Well, here it is. Another year. Christmas came and went, then New Years came and went in the same mad blur. I have been very busy lately and it has helped me keep my mind off things. I have let myself become enveloped by work through these holidays and it
90) 12/27/00 01:32:12
Name: robert Location: alexandria, virginia usa E-mail: email@example.com Comments:
89) 12/16/00 07:30:25
Name: Natasha Location: Richardson, Texas USA E-mail: AssistforU@aol.com Comments: Waiting to find out results of CT scan to determine if I have Romberg's or en coup de sabre [localized] scleroderma.
88) 12/06/00 08:10:29
Name: Janette Location: Sydney, NSW Australia E-mail: firstname.lastname@example.org Comments: Hey, Im Janette, daughter of Sandra Norris (if any of you know her) This is my first time here even though I have known about Rhombergs for 6 years. My mum is a regular visitor here and I am just writing to you to say thankyou, mum seems to stress alot mo e about me having the disease then I do! and if it wasnt for you, I dont think she couldve handeled the recent news of me going into surgery in Feb for an artificial bone transplant and fat injection. Im getting a little scared about it now especially sin e its only a few months away and I have no idead what to expect and what it will be like to look "normal"!! so yeh, Thankyou you have all helped her alot through all this and made her feel alot less guilty for something that she has no control over. If any of you feel like emailing me, feel free I'd love to hear some of your stories!! Cya's soon Janette
87) 11/26/00 08:19:19
Name: Lisa Location: ADELAIDE, South Australia Australia E-mail: Comments: Greg, My love, thoughts, and prayers are with you now, and always. all my love Lisa xx
86) 11/26/00 02:00:02
Name: Location: E-mail: email@example.com Comments: Hi everyone, I just wanted to let you know that Mary Burau (Terry's Mom) suffered a heart attack last Tuesday. She will be going in for triple bypass surgery tomorrow. Please keep her in your prayers.. God Bless, Greg
85) 11/20/00 20:43:32
Name: Jami Location: Morganton, NC USA E-mail: firstname.lastname@example.org Comments: Hello, My name is Jami and I really loved this site!! I have parry romberg syndrome and if anyone would like to ask any questions please do!! If anyone can offer me any please do!!! I would love to become email buddies with you all. Thanks alot and May God Bless YOU! YOUR FRIEND, JAMI
84) 11/18/00 16:58:48
Name: Kimberly Location: St. Cloud, FL USA E-mail: KDFOX@aol.com Comments: My daughter, age 14 was just diagnosed with Progressive Hemifacial Atrophy. I can use all the information and support I can find. Thank you
82) 11/09/00 19:58:23
Name: Location: E-mail: email@example.com Comments: Anyone that knew Terry knew about Halloween and the fun that Terry and I had together on that night throughout the years. About 5 years ago he purchased a Batman mask and gave it to me a s a joke. I slipped it on and he said I resembled the Movie characte . I thought it would be fun to make a costume and go out on halloween and have fun. I ended up finding entire costumes on the internet. They were molded from the movie molds and looked as real as you can get(If you arent the real Batman...Ha ha) so I boug t them. I called Terry up and got in the suit when he drove over. They were amazingly realistic and we decided to have fun and go out on Halloween to a dance place and have fun at a costume party. There is no such thing in the world as Super Heroes. But, n our culture, we grow up with the idea that there may actually be. We see it as kids and want to believe. I think that was the fun of wearing those costumes with him. For one small slice of time we were those fictitous characters. You felt it as you slip ed it on and people acted as if you were. We were never crazy enough to think we were them, but it was fun. In all actuality a seven year old would kick your butt if you have the suit on. They are way too stiff to move in.
Man, I would give anything to see Terry dressed as Robin this last Halloween. To hear him say "We must be what they would look like their late thirties. With Thinner hair and bigger stomaches." He never let anything get in the way of Halloween together and neither did I. I think it was a link to our childhood together. An important bond that said we were still young, even if it was just in our minds. Well, Halloween came and went this year with out Terry. I slid into the tight latex suit and slid the boots on and the cape and slid the mask into place. I went out this one one last time. To dance and have fun and remember Terry and wish I could see him trying to keep the Robin mask in place while sweat rolled off him. Damn it's hot in those suits. I finished the night by thinking of him. The same way the night started.
I arrived home and slid the costume off and wiped it down and placed it back into it's box. I decided that night that Batman retired. The bond that held Terry and I together on those fun and magical nights has dissolved. The child inside me that was shared by Terry has died along with him. I always got a kick out of seeing people talking to him in that suit. I always wished they knew that he was a bigger Hero in real life than that suit could ever be.
I missed you this year Buddy. No Robin could take your place so Batman retires....
All my love, Your Little brother, Greg
81) 11/04/00 09:10:29
Name: Tena Location: West Fargo, North Dakota USA E-mail: Comments:
80) 10/25/00 02:37:19
Name: Ellen Lee Location: Colville, WA USA E-mail: firstname.lastname@example.org Comments: My daughter, Meagan, is 19 1/2, we have known about her Parry Romberg since she was 18 months old. She has thinning skin and atrophy of her chin, her seizures are currently under control with medication. She is very light sensitive (extremely so) she is also very prone to severe headaches. Meagan is frequently tired. She has also the connecting diagnosis of lack of right-brain function. She is left-side impaired and her memory and motor skills are impaired. Meagan has speech problems, but she works very hard to correct and has had extensive dental work and retainers to improve her dental bite.
79) 10/23/00 01:54:13
Name: Katie Location: Midland, Michigan US E-mail: email@example.com Comments: I am only 13 years old and i was diagnosed 2 years ago. I love this web site. I am very inerested in finding out new things about this disease. I think i am lucky to know at such a young age.If it weren't for having such good caring friends, i wouldn't have known about any of this. One of my friends noticed a difference in my face in 5th grade so i went to my parents and asked them to set up an appointment. They sent me to a specialist and it has gone on from there. I am now making a journal, and filling in with pictures, records of my migraines and eyeaches,and information. My mom takes the time at work to visit your web site as much as possible. My mom's friend told me i wasn't any different than anyone else. "God chose me and made me special." I believe her. I'm so glad people like you are willing to share your story with me. That way i can learn while relating to each and every one of you. I am glad to know about romberg's at such a young age. It will make me a better and more responsible person in life. -Katie
78) 10/21/00 05:04:49
Name: Karen Location: Tucson, Az USA E-mail: Kat7221002 Comments:
77) 10/20/00 16:39:39
Name: Howard Location: Stewartstown, PA USA E-mail: firstname.lastname@example.org Comments: I have Rombergs too.
75) 10/18/00 22:20:34
Name: Anne Location: NY, NY USA E-mail: Annieissa@aol.com Comments: 35 yrs old. Diagnosed w/PRS in 1992m after going blind in left eye. Facial changes on right side of face only.
74) 10/10/00 13:14:04
Name: adele Location: Staten Island, New York USA E-mail: email@example.com Comments: Hi Greg Burau, So many folks would love to contact you and share their stories with you about Terry. Please let us know how we can write to you. We look forward to hearing from you. Take good care -- you are in our thoughts. Love, Adele
73) 10/09/00 23:45:13
Name: jennie Location: paoli, pa usa E-mail: firstname.lastname@example.org Comments:
71) 10/06/00 17:49:42
Name: Jessica Location: San Antonio, Texas United States E-mail: Comments: Hi!, I am a 30 year old college student pursuing a degree in criminal justice and I am interested in joining a suport group with Romberg's Disease. I was diagnosed with this disease at age two. I have had numerous reconstructive procedures and would like to share my story with someone who is willing to listen. Please fax me a response to 210-737-1495. I have not set up my e-mail address, however I will e-mail my address as soon as possible.
69) 10/04/00 16:00:35
Name: Trish Location: Baldwin, Maine USA E-mail: email@example.com Comments: My 9 year old daughter was diagnosed with Romberg's yesterday. We have to see a specialist at Children's Hospital. Some of the stories on this site scare me a bit...does anyone know if the seizures and headaches, etc. are inevitable? She has none now (and I think this condition began about 3 years ago). Her facial incongruity is definitely becoming more pronounced, however. Any advice would be greatly appreciated.
68) 09/30/00 07:17:52
Name: Liz Location: central coast, nsw australia E-mail: firstname.lastname@example.org Comments: I found your website last year when I was going through a difficult time. It is unbelievable that after so many years(I was diagnosed in 1966)I have found others who have this. By reading your site I have found out more about Rombergs than I have known for the last 34 years.
67) 09/27/00 01:35:11
Name: andra Location: Danville, KY USA E-mail: DAdamsFmly@msn.com Comments: My boss' 17 year son has just been diagnosed with this disease. I wanted to learn more about this so that I can understand what she is going through and be a friend to her. Thank you for providing me a way to be a good friend. God bless you all.
66) 09/25/00 22:43:02
Name: Location: E-mail: Comments: Hi Terry, It's been a long time since I sat down to write you. I have made a lot of changes in my life since you passed away. I moved to another State and changed careers. It's all kind of hard without you to talk to. I started a new job at NBC. Yep, the T.V. CHannel NBC.... I am a Broadcast Engineer now. I get to play with all the latest toys in Satellite and Microwave transmissions. We go do all the live shots for the local news and setup and repair studio equipment. I also maintain their networks. Setup new accounts, security, etc....Its the most interesting job I've ever had. It's a lot more exciting than building Airplanes for Boeing. But one huge thing is missing. It's like it's not that big of an accomplishment because I can't share it with you. For my entire life we shared in being proud of each others accomplishments and thats gone now. I would give anything to get to talk with you about this change and the things I feel right now. Mainly I feel happy, but I still get strong urges to call you and visit you. It is like I can't quite come to terms deep inside that you are gone. I will be driving home and think I should call Terry and for a split second I am off in a place in my mind where I actually could call you. Then reality hits me and I fly apart inside in a million directions. I die each time I remember that you died. One thing that I have gained from this is the knowledge that I can't run anymore. I have always run from emotional pain Terry.. You know that better than anyone that knows me. But, I can't run anymore. There's nowhere to run to. I can't outrun this loss. I miss you. I love you with all my heart. Your Little Brother, Greg
65) 09/12/00 23:18:21
Name: Amaro Location: Chihuahua, Chih Mexico E-mail: email@example.com Comments: Hola a todos, tengo una amiga a quien la han diagnosticado esta enfermedad, estoy seguro que le gustaria recibir noticias de alguien mas en español, si me escriben yo le pasare sus comentarios. Espero que pronto concluyan la version en Español de la pagina. Saludos y gracias.
64) 09/06/00 12:56:53
Name: Chris Location: Midland, Midland US E-mail: SwedbergCL@mps.k12.mi.us Comments: I was just reading about Terry and laughing and crying at the same time at the stories in his tribute. My daughter has the disease and I am just finding out more about it. Can you please tell me how Terry died? I was in Washington last year and ALMOST called him but chickened out so when I heard he died( I have been without internet for 5 months it really hit me. Thank you, Chris
63) 09/02/00 11:35:13
Name: Pip Location: Dubbo, N.S.W. Australia E-mail: firstname.lastname@example.org Comments: At last I have found that there are othes with the Parry Romberg Syndrome. There have been times when I thought I must have been the only one because when I was diagnosed with it some 40 odd years ago you never questioned what you were told by the medical profession.
62) 08/29/00 14:13:36
Name: Marilyn Location: E-mail: Comments: Doreen, Your e-mail address does not seem to be valid. Please contact us again.
61) 08/28/00 16:04:25
Name: Doreen Location: Coconut Creek, Florida USA E-mail: email@example.com Comments: I do not have time to tell my story at this momment, but I do have Rombergs. I have had it since I was 15. I am know 26 years old. I used to belong to this link a while ago, but unfortunatly I have been out of touch for awhile. But, I am back and I am doing fine. Doreen
60) 08/25/00 17:52:32
Name: kim Location: Owings mills, md America E-mail: Brightfulr@aol.com Comments: I am a 32 year old who has been having problems with rombergs since I was 18 I am still having alot of problems very bad headaches and more sinking of my face.what is there to do?please let me know .Im not to good on computers would you be interested in writting me? Thank you for your time. kim
59) 08/14/00 23:27:55
Name: Greg Location: E-mail: Comments: Still missing you Terry. What do I do to fill the hole that was left in me? I guess I just have to remember that you were the best and some holes can't be filled. All my love, your little brother.... Greg
58) 08/12/00 17:07:58
Name: Maye Location: Manzanillo, Colima Mexico E-mail: Comments: Yo padezco esa enfermedad y hasta hace poco no sabía ni como se llamaba, espero seguir en contacto con ustedes.
57) 08/12/00 09:17:45
Name: irene Location: melbourne, victoria Australia E-mail: firstname.lastname@example.org Comments: It's great to finally see people who have the same disorder as I do.
54) 07/27/00 20:21:26
Name: Jill Location: Monroe Twp, NJ USA E-mail: Comments:
53) 07/26/00 23:43:57
Name: Lynda Location: Auckland, New Zealand E-mail: email@example.com Comments: It's great to find a support group for Romberg's. I was diagnosed with it in '93, at the age of fifteen, and felt like the biggest freak around. It's great to know there are so many others out there. I tried to subscribe but I did some thing wrong, so I'll try again later. I'd love to correspond with anyone, I've never met anyone else with Romberg's,so it would be great to hear from you.
52) 07/24/00 20:50:06
Name: Barbara Location: windsor, Ca usa E-mail: firstname.lastname@example.org Comments: Dear Gregg, You probably don't remember me since you were very young when you lived in Ca. I'm your mom's cousin. I'm very sad about Terry. I've been trying to find this disease online but I wasn't quite sure how to spell it. I would really like to know more about it since we are all related. Words can't express how sad I feel. But the world is a better place since Terry was part of it. Just remember he is only a thought away and knows you love him as well as everyone that knew him. I'll check back here.Send me your e-mail address so we can correspond. Love your second cousin, Barb
51) 07/21/00 22:37:40
Name: Greg Location: E-mail: Comments: PS...... Terry, that last one was from me... Love, Greg
50) 07/21/00 22:36:09
Name: Location: E-mail: Comments: Hi there, This is an update to my Brother Terry. Look back a few lines in this guestbook, and you will see I couldn't remember if we went to Mt. Rushmore? I thought we had but I may have been mistaken. I think on that day we opted for Custers battlefield. I remember when we were looking at Custers Battle field we were saying "how the heck did they get snuck up on here?". It seemed kinda flat to be surrounded without noticing. Oh well, enough babble. After not being able to remember if we had gone or not and after hearing how bad you wanted to see it I took a little drive. Actually it was a 1200 mile drive but who's counting. I saw it Terry, It was amazing. It was everything that you thought it was. I also saw Devils Tower. I know you would have been in awe to stand below it. I still can't remember for sure if we tried to see Rushmore together or not. Now that I have seen it though I will tell you all about it when we get to see each other again. I miss you with all that I am. Life was living because of you. They say life goes by in the blink of an eye.. Blink,Blink,Blink,Blink............ Still waiting... :(
For everyone out there, Terry used to do this funny thing, he said you know how they say the hand is quicker than the eye? Then he would blink real fast and move his hands like mouths opening and shutting right next to them.. Then he would say......" You be the Judge".... So stupid..... and so endearing.....
49) 07/12/00 22:09:54
Name: Kristy Location: Manitowoc, WI E-mail: email@example.com Comments: Last e-mail I received from Terry was this spring. He was excited about getting married in the near future. Now he is gone. What happened? Where? When?.... Please help.
48) 07/12/00 04:36:36
Name: Sylvia Location: Nerang, Queensland Australia E-mail: SylviaHaj@hotmail.com Comments: Suffering with Rombergs for over 20yrs and feeling very alone its now great to know l can get support from others that underestand.Just wish we all had the same symtoms then we really could let each other know whats waiting for us.
47) 07/10/00 15:15:37
Name: Cindy Location: Plymouth, Devon England E-mail: firstname.lastname@example.org Comments: My father have a medicine which reverse almost totally the Parry Rombergs disease, his a medical doctor and I am sure that you will be interest on the study of the effects that this medicine have on the disease, the problem is that no detail research have been done because is not money.
46) 06/28/00 20:03:31
Name: Tito Location: Fortaleza, CE Brazil E-mail: email@example.com Comments: For the first time in my life (I'm 27) I've read about people with the same disease I suffered. My doctors at the time just said that I have facial localised sclerodermy. It is very good to have a better picture of my problem.
45) 06/22/00 17:45:37
Name: Judi Location: Poulsbo, WA USA E-mail: Comments: Terry and Greg were part of my family for several years. I am so proud of the obstacles Terry overcame and what he did with his life. As a nurse I know some of the physical battles he fought. I miss you both!
44) 06/16/00 12:35:47
Name: Tina Location: chicago, il usa E-mail: firstname.lastname@example.org Comments: My niece Christina has recently undergone her 4th or 5th surgical procedeure. She is 17 and recovering. Thank you for your website. I am going to talk to her about it. I think it may offer her great support! Thank you!
43) 06/10/00 20:54:57
Name: Rebecca Location: Cliff, NM USA E-mail: email@example.com Comments: Have coup de sabre. Am told form of Rombergs? Depression of right forehead with baldness. Love to hear from anyone!
42) 06/07/00 19:48:23
Name: Greg Location: E-mail: Comments: Well, here it is, almost a month has passed and this still doesn't seem real to me. I still check this page every chance I get to see if the tribute picture is still up. It always is. I guess I keep hoping that this is some awful dream and I have finally wake up or something. I miss my Brother a lot. I miss hearing that voice say "Hey, Bro..What's up?" I miss sharing corny jokes with him. I miss talking about what new movies are coming out and how we can't wait to see them. I would honestly die a thousand deaths to get one more day together. There's something that happens in Death that alot of people go through. They look back and say, "I wish they knew what they meant to me. I am so glad and fortunate that I don't have to endure that feeling. Terry always knew that he was my best friend. He knew that I loved him. I still do. I am having a hard time right now. Terry and I shared our whole lives together. We left home at a young age and traveled all over the U.S. together. I was talking to his Fiance while I was in Canada and recalling a foggy day that he and I spent together at Mt. Rushmore and how we couldn't see the monument. I recall that drive through the black hills of South Dakota. Faintly, but the memory is there. She said "Terry said he never got a chance to go there, but he wanted to." That makes me wonder, did it happen? Am I recalling some other place, or am I remembering it right? Normally I would call Terry and we could talk about it and see what jogs a memory. We traveled to so many places it's easy to mix them up. But, I can't. I can't call him. I can't ask anyone. There's no one that shared those memories anymore. I can't believe how alone that makes me feel. well, I just had to vent in the only place that lets me feel close to Terry. Sometimes I can hear him telling me inside "It won't be too long Greg, I'll see you soon." I just want you to know Terry, "every day without you is too long". Until then, I miss you Bud, All my love, Greg
40) 06/01/00 19:19:41
Name: silvia Location: houston, Tx USA E-mail: firstname.lastname@example.org Comments: Gracias por sus esfuerzos!
39) 05/25/00 20:12:22
Name: Laurisa Location: Regina, Saskatchewan Canada E-mail: email@example.com Comments: I want to let everyone who is a part of the Romberg's Connection know just how much you all meant to Terry. He was so proud of the Connection and his friends here meant the world to him. To put it mildly, Terry didn't have the easiest life in the world. As he said, "The Good Lord must have taken a real liking to me because he sure gave me a lot of chances for personal growth".
Terry wrote in an e-mail to me back when I first met him,"...by hiding in myself, by not exploring this gift of life as fully as I can, I have let myself down. Life is too precious a gift to waste it, and I've promised myself I will do my absolute best not to do that anymore."
He didn't. Terry and I lived each day to the fullest. We promised each other that we would never go to bed angry with each other and we never did. We did have a few nights when we had to stay up all night, but when we did get "irritated" with each other, it was usually because each of us was trying too hard to make the other happy.
One day I had kind of a hard day with work and Terry got some bad new about a lawsuit he was involved with. We decided to go to the video store and get a movie and just spend the rest of the night snuggling on the couch. Well, we got to the video store and I had in my head a movie that I though would make him smile and I really wanted him to see it. He had in mind a show that he thought I would enjoy and we butted heads -- both trying to make the other happy!
I don't regret a single moment of the all to short time I got to spend with Terry. (I was thinking about it and if we would have both lived to be over 100, it still wouldn't have been enough time!) Every moment was a gift and it was the happiest time of my life. We had so much fun. We were always laughing, singing and basically making the most of each moment. I told Terry how much I loved him and how proud I was of him so often that he was probably getting sick of hearing it!
Terry I wrote literally thousands of letters to each other, but there is one e-mail that stands out that I would like to share with the members of the Connection.
Terry wrote: "Hello, my beautiful wife, I know this might sound like a stupid letter, but I've been thinking about this. I guess this letter is about self-acceptance, and you loving me for who I am. I am going to get a haircut, and I'd like you to be here when I get it. Not my normal haircut where I try to hide stuff, but a short haircut. Since my hair started to get a little thin, I've been avoiding this. I may not look as cute as I do now after the haircut. This is kind of a big deal for me, this self-acceptance thing. Trust me, I know you love me no matter what. I feel the same way about you. I'm just nervous. Hope this doesn't sound stupid. Love, Your husband, Terry."
(Just incase anyone is wondering, Terry and I didn't get the chance to get legally married, but we wrote our vows and said them to each other and in our heart we were husband and wife.)
Anyhow, back to the haircut letter and my reply: "Hi Honey! No, that doesn't sound stupid at all. Of course I will go with you. I would do anything for you -- you know that. .... I happen to know you are still going to look good if you get your hair cut short. You know how I know? Because you would still look great if you shaved your head bald. But... don't take my word for it. All you have to do is look in the mirror. Do you want to know what I see when I look at you Terry? (Too bad if the answer is no because I'm tellin' ya anyhow!)
I see a man who has inspired me to confront my greatest fears head on. I see a man who has shown me how to trust myself and believe in myself again and a man who has shown me how to see the good in others again and given me the courage to trust another person. I see a man who has empathy for others which I think is probably the most important quality a person can have. I see a man who just by being himself "warts and all" has made me so proud that he wants me to be his wife. I know you don't want to be the kind of hero that people set unrealistic expectations for and expect to be perfect all the time, but you -- the real you -- the one who is just a guy with problems and fears just like the rest of us is a hero for going through quite a bit in his life understatement of the century!) and coming through it all still able to care about other people and willing to try to help others.
When I look you, Terry, I see the man who has helped me remember my dreams and come up with quite a few new ones. I see a man who has shown me how to live again and not just exist, but most of all I see a man who has helped me to feel that I do deserve to be loved and that is the greatest gift you could ever give anyone. For me, being near you is like magic and that is the only way I can really describe it.
Back to what I see when I look at you. I see a man who is so sexy that he takes my breath away. I see a man with a wonderful sense of humor who is intelligent and so much fun to be around.... (Next section is censored :-) !)
But, it doesn't matter so much what I see -- it is what you see when you look in the mirror that really matters and I hope that what you see is a man who is ABSOLUTELY AWESOME and is going to be damn cute with short hair or no hair at all.
I love you with every fiber of my being. (Can't believe I am actually saying corny things that I have heard before and practically gagged because at the time, I just didn't get it. But I really mean it. Terry, you are my soulmate.) I believe in magic again! Love always, your wife, Laurisa."
Terry changed my life and I miss him desperately, but I know that he would want me to keep on and stay as strong as I can for my son Ryan (5 years old.) This is the hardest thing I have ever been though, but I will make it through and that is because of something that Terry taught me. I don't have to do everything alone. I always thought there was shame in having to ask for help, but Terry taught me that asking for help actually takes great courage.
I have one more quote from a letter Terry wrote to me only a few days before he passed away. He said,"Laurisa, I don't really know how to explain this, but I can feel you in my soul. No matter how far away you are, when I close my eyes and reach out to you, I can feel your presence there. You are a part of me, the best part of who I am."
All I can say is ditto, Terry!
I love you Terry and I am so proud of you. I know you are at peace now and knowing that I will get meet you again someday gives me the strength to keep on.
To everyone in the connection, it would mean the world to me if you would all let me stay involved. I am willing to do anything I can to help out. You were so important to Terry and you are important to me. Sincerely, Laurisa
38) 05/25/00 11:11:16
Name: Theresa Location: Chicago, IL USA E-mail: firstname.lastname@example.org Comments: Karen, just want you to know that you are not alone in this. We are here for you when you need us. Please write to us at email@example.com, we'd like to get in touch, but you didn't leave your e-mail address ;-) Thanks, Theresa
37) 05/24/00 21:53:21
Name: karen Location: grand falls-windsor, newfoundland canada E-mail: Comments: i have rombergs ... recenty diagnosed.
36) 05/22/00 00:55:28
Name: Marilyn Location: E-mail: Comments: Mary, I'm glad you have found our group. I hope you will write your personal story for our web site and please give us a complete e-mail address so we might write to you. Marilyn
35) 05/21/00 19:31:10
Name: Mary Location: Manchester, MA USA E-mail: annasmom1 Comments: It is fascinating to look at pictures of people who look like me! I'd like to write my story to be posted. I'll work on it.
34) 05/20/00 21:28:26
Name: Steven Location: Chicago, IL USA E-mail: HighPingDrifter@hotmail.com Comments: Memo Subjekt: Mistah Burau, He Gone... The bond that links your true family is not one of blood, but of respect and joy in each other's life.
Rarely do members of one family grow up under the same roof. ---------- Don't be dismayed at good-byes. A farewell is necessary before you can meet again.
And meeting again, after moments or lifetimes, is certain for those who are friends.
[ Richard Bach, 'Illusions' ]
'Build it, they will come,' I said to my wife Theresa, remembering Shoeless Joe's ghostly whisper to Kevin Costner in 'Field of Dreams'...'Build it, they will come,' I told her as we looked at what would soon be named the 'Romberg's Connection' homepage back in June of 1997. After months of frustrating searches for information on Romberg's Syndrome, we'd decided to erect a homepage in the hopes that others living with Romberg's would find it and contact us. It was a very humble beginning.
As fate would have it, the very first 'Romberger' to find us was Terry Burau from Seattle, Washington. Neither Terry nor Theresa had ever known another person afflicted with Romberg's Syndrome. You can well imagine the joy and the wonder they both felt at finally having another Romberger to talk to. The three of us became fast friends, and pretty soon we found Monica in Minnesota, Marie in Western Illinois, Marilyn in Iowa, and Judy who lived not far from Terry in the Seattle area.
In October of 1997, we decided to stage a get-together in Dubuque, IA. Terry hopped on the Slamtrak Cannonball and came East to meet us in Chicago and ride along with us to the big meeting. We spent about 72 hours together that weekend, and when it was all over, I felt like I'd made the best friend I'd ever had, like I'd known him all my life. It was so damned hard putting him back on the train to Seattle.
An excerpt from my journal:
[Quote ON]'Monday came grey, cold and wet. It seemed that with Terry's imminent departure, the last of the good weather had decided to skip town as well. Riding the elevated train back downtown, we were talking a mile a minute, trying to squeeze every last word in. It was really hard for me to say farewell. For three all-too short days, we had spent hundreds of miles and nearly every waking moment together, the three of us, and I for one had made a very good friend...and now he had to leave. So when we got to the boarding gate, we said 'until next time' instead of goodbye, knowing that somehow or other, God willing, we'd see our friend again. Tearful last-minute hugs, and then he was off.'
'He never looked back, not even once, as we watched him walk down the platform at Union Station toward the front of the train. Soon, he was lost in the crowd, and Theresa turned and buried her head in my chest as she cried. I kept looking down the platform and could occasionally see his head bobbing back and forth in a sea of people. Vaya Con Dios, Mistah Burau...we will meet again.'
'As I finish typing this, Terry should be almost home, his train rolling a'clickity-clack through a grey, foggy dawn somewhere in the Cascade Range, with Seattle just a few hours beyond. I hope he's awake to enjoy the scenery...Gordito, our cat, seems is confused and upset that Terry's gone. He keeps climbing up on the guest bed and meowing at me, as if to say, 'Where'd he go, boss?? Is he coming back?' I dunno what to say, except that it's really hard to type through the waterfall of tears splashing on my keyboard. I'm not one to make friends easily, or quickly, but it happened just that way.'
'Theresa says I miss him more than she does. She may be right.' [Quote OFF]
Terry became one of our best friends. (We have the long-distance phone bills to prove it) There was such a commonality between us that we were never 'new' friends, but 'old' friends from the git-go. He was there for us, and we for him. Terry always had a place to stay in Chicago, and I think we might have hinted loudly that if he ever wanted to move to Chicago...well, you know. It was so frustrating to feel such a compelling bond between us, and yet, our lives were half a continent apart.
I remember the night before the first get-together in Dubuque, the three of us sat on a bench on a dark sidestreet behind our motel in Maquoketa, IA., philosophizing, talking about all manner of things, and wishing we lived close enough to hang out together all the time. Right now, I think I'd give my left hand for another hour on that bench with Terry, BS'ing and listening to his corny, deadpan jokes. Lord, how I will miss those jokes...'I was born by C-section and I'm perfectly normal, except that when I leave the house, I go out the window.' You were a funny guy, Mistah Burau.
Terry was more than a friend...he was like a brother I never had, and he was an inspiration to me. We'd both had difficult lives, and we'd both survived/overcome alcohol problems. Terry was a tenacious fighter..he met life head-on by it's own non-existent rules, and when he got knocked down, he always got back up and said, 'That was the best you got? HA!' He never gave up, he never backed down...he asked no quarter and he gave none, and he was never intimidated by long odds. He taught me, by his example, never to give up, no matter what.
He taught me that distance means nothing where friendship is concerned. Other people just don't understand how Terry could be such a good friend to us when we'd only met him in person once, for three days. But they didn't know Terry. Terry was all up front, there was no bullsh*t about him...what you saw is what you got, and all, absolutely, for real. No games, no masks, no attitudes. Just Terry. That caliber of honesty is hard to find in this life, and it was one his most wonderful qualities, I think
Probably his greatest gift was selfless compassion, the ability to put his own troubles aside and reach out to someone else in need of help, a kind word, a corny joke, etc...no matter what was going on in his life, he made time for newcomers to the Rombergs group. When he and my wife Theresa first made contact, it was like 'coming home' for the both of them...they were no longer alone, there was someone else living with this rare disease. Terry never forgot that feeling and tried to be there for the new people. He spent a great many hours e-mailing people around the world, and in helping others, he helped himself. I think it a fitting legacy that the group he helped start now numbers 200+ members around the world. He touched a great many lives, and he will be sorely missed.
I'm not nominating Terry for sainthood. We knew each other's life story, and sainthood was pretty much out the window for both of us...on more than one occasion we joked that if we somehow managed to get into Heaven, they'd probably make us stand in the back. But bro, I'd stand next to you anytime, anywhere. Save me a spot in the last row, I'll be along whenever.
Tuesday evening we got the terrible news that Terry had died. Saturday morning, it still doesn't make a damned bit of sense. It's like one of Terry's jokes, I keep waiting for the punchline...but there isn't one, and it's no joke. I feel like some field came along in the night and ripped off one of my limbs. Terry meant that much to me, though I didn't quite realize it until he was torn from my life.
These last days, it's been grey, cold and wet here in Chicago, just like when Terry boarded that train almost three years ago. It's as if Terry dimmed the lights on his way out. I feel very sad this morning, sad that I will never see Terry again in this life, nor will he, as an honorary uncle, get to teach my children bad habits [Grin] ... and yet, I feel very blessed to have been friends with him for the time we had. I know that his spirit will remain with us so long as we allow his love to live on in our hearts and fondest memories.
Vaya Con Dios, Mistah Burau...we will meet again. Steven [ HighPingDrifter@hotmail.com ] Romans 8:38,39 'And a thousand, thousand slimy things lived on...and so did I.'
33) 05/19/00 16:03:44
Name: Lory Location: Beloit, Wisconsin USA E-mail: firstname.lastname@example.org Comments: My sympathies to the friends and family of Terry. My gratitude and appreciation to Terry as co-founder of the Romberg's Connection. Although we never met, his humor and the way he attacked life was refreshing and inspiring. He is, indeed, a role model we can all be proud of.
32) 05/19/00 01:08:51
Name: Lisa Location: Adelaide, SA Australia E-mail: Comments: To Greg and family, and to Terry's Connection family. My heart goes out to you all, and my thoughts are with you at this very sad time. Lisa
31) 05/18/00 23:23:24
Name: Greg Location: E-mail: Comments: I cannot explain to anyone the grief that I am feeling right now. Terry was my Brother, My best friend. It was always him and I glued at the hip through out our lives. I lost a part of me on the 15th that I cant replace nor ever want to.
Terry was everything that you all thought he was and more. He had courage inside him that kept him going. It was people like you that gave that to him. I want to stand up and thank you. Before this connection page started he had no one that understood what he felt. Then he had you. Thank you all so much for that gift.
Now to you Terry, You always read the updates,and answer them no matter how busy you are. So please read this.
I love you Terry. You are everything good in life that I hope to someday be. You are more than a brother to me. You have always known I love you. You were such a good man and decent human being.My life without you in it began a few days ago, its so hard to not look you in the eye and tell you I love you and miss you. I will carry on here on earth until God says I can see you again. I just want you to know its not easy. I want you to know we all miss you. We are talking of old times just like you wanted and we are smiling alot. But, its very hard to smile and cry at the same time.
I love you Terry. We went through hell together and always came out ok. We always retained our love and friendship for eachother and I know we still will. I will see you soon Big brother Please take care of the part of my heart that you took with you. I will need it back when I see you again so I can love you with all of it again.
I love you Terry...Please rest in piece... All my love, your little Brother... Greg
30) 05/18/00 15:08:25
Name: adele Location: Staten Island, New York USA E-mail: email@example.com Comments: God be with you on your journey home Terry. My love to you always. adele
29) 05/18/00 13:25:43
Name: Theresa Location: Chicago, IL USA E-mail: firstname.lastname@example.org Comments: Terry was the very first person that I talked to who had Rombergs. It was a very powerful connection that the two of us had. Just knowing that the other one was across the US, dealing with all the same crap as the other, made us feel better. I look back to those "early days", when we would spend hour upon hour, searching out every lead to find a 3rd person who could share our comraderie. Never in our wildest dreams did we think that this would grow so large. Terry once told me that he was glad that we started the Connection. He said that the Connection would be his legacy, proof that he had lived. I just never thought I'd have to say goodbye so soon.... Theresa
28) 05/18/00 03:29:07
Name: Sharne Location: TX E-mail: email@example.com Comments: God be with us all. Dear Terry will be missed greatly. The news of his death was unbelievable. We never met in person, however, like all of you who regularly read, and keep up to date with Romberg's Connection know what an important part of our continuing quest of information that Terry was. His words touched us all, and we are joining in the sorrow with his loved ones. Good Bye Terry. You will be missed, but we will meet one day, by the Grace of God. Your friend, Sharne.
27) 05/04/00 02:13:00
Name: Gary Location: Norwalk, CA USA E-mail: Vervette2@aol.com Comments: After looking at this site,I begin to think that theres other people out there that have the same face as mine. And looking at some of the personal experiences, you see the same that I went through. Contact me at (562) 868 2706 I would love to hear from you!
Name: Gary Location: E-mail: Comments: 05/04/00 02:01:54
25) 04/28/00 19:30:47
Name: yvonne Location: Birmingham, Alabama U.S. E-mail: firstname.lastname@example.org Comments: I was diagnosed with Parry Romberg Syndrone when I was 35 years old. I am now 58. It started when I was 14 with scleroderma along the left side of my scalp. It progressed from the back to the front of my scalp and at 16 I had surgery to remove it. It also progressed down the left side of my face and then mysteriously stopped. During my 20's I had severe migranes and in my 30's I had the Jacksonian seizures. Needless to say I have been diagnosed with everything and many doctors tried to convince me that my symptons were of a hysterical nature. When I was 35, a wonderful doctor put a name on what had been happending to me throughout my life. I now have a deformity of my left eye, skin shading and bone abnormality down the left side of my temple loss of eyelashes, and left brow and thickened skin around my left eye. I sometimes have lightning flashes in my left eye and severe pain down the left side of my head. All my life I have lived with a disease that no one seemed to know about and doctors have tried to convince me that all my problems stemmd from an emotional disorder. Now at 58 years of age I have finally accepted the fact that there was absolutely nothing I could have done to change things. There are very few people who even know that I have a disease other than my face is definitely not symetrical. I do not know if it will progress; however, at least I know what it is.
24) 04/26/00 01:59:24
Name: Lynda Location: Upper Darby, PA US E-mail: email@example.com Comments: Could I please add your site to the "other disabilities" section of my site. Please feel free to sign my guestbook. Warmest wishes, Lynda
23) 04/10/00 14:32:58
Name: Dr. David Location: Dunfermline, Fife Scotland E-mail: Comments: Excellent resource
21) 04/10/00 00:44:08
Name: John Location: Mesa E-mail: Egyk787@aol.com Comments:
20) 04/09/00 12:52:50
Name: Les Location: CANBERRA, ACT AUSTRALIA E-mail: firstname.lastname@example.org Comments: I signed the guestbook some time ago but didn't include my story ... here it is ....
My name is Les, I am male, 47yrs .... my rombergs started as a teenager and over 4 years or so was quite progressive ... wasting away over the left hand side of my face, especially noticable with the eye. I had a lot of plastic surgery in my late teens/early 20s. The codnition caused me much embarrassment (opposite sex etc) but yet I never had any problems with dating .. nevertheless i do remember always being very self conscious of it and on occassions being very embarrassed. Funny how some people say "god, what happened to you !!! whilst others who have met you plenty of time before say "I never noticed ....."). As I got older my concern etc reduced. I had major surgery in my late 20s (derma-fat from my upper thigh into the side of my face to try to get some balance back). A major op, 8 hours etc, not vert pleasant at all. Nothing since then apart from some minor implants around the eye (sylastic). I read with interest the headaches some suffered - I certainly had many migranes in my 20s but they have rduced to almost nil.
My major symptoms now are a very sore eye (the eye is exposed moreso than the other other and usually looks "angry"). Now i am older and carry more weight the side of the face looks swollen because the derma-fat graft has put on weight along with the rest of my body - but the normal side of the face has not. I am considering getting something done about it and am currently getting advice.
It was wonderful to find the homepage and read the stories ..... its a small world isn't it. My condition is continually with me due to the sore eye, the disfigurement, and the slight numbness etc over the side of the face.
I need to read in more detail the stories I have downloaded but I note many stories have similar stories such as mine, but many are very different. I feel i should be LUCKY in some respects because although I have this problem, it makes me appreciate how much worse some people have it in this world (the story of the man feeling sorry he had no shoes until he saw a man with no legs ... etc). I have good family suport, wife and son, good job etc and all in all life is very good. Nevertheless I often think how wonderful it would be if I didnt have this burden. My medical care has been great, i was in the Army for 22 years and the Army in its wisdom thought my condition was caused by a blow to the face playing "organised sport" so I am fully covered for costs etc. I read with interest one persons story about me ical insurance in the US - thank goodness we have universal medical cover here in Australia. Well I would love to discuss this with anyone from Australia in particular. regards Les
19) 04/07/00 03:29:31
Name: Marilyn Location: E-mail: Comments: Deanasan, Please give us your e-mail address, so we might correspond with you.
18) 04/06/00 19:10:58
Name: deanasan Location: Sarasota, Fla USA E-mail: Comments: I am so glad there is a support group for Rombergs. I had no idea there were so many other people afflicted. My heart goes out to all those that have suffered pain and those that have continued deterioration and extensive deterioration including other parts of the body. Also, God bless the children that have to deal with this condition. I was'nt diagnosed with Rombergs until my mid twenties but, I believe It started when I was 17yrs old. The right side of my face is affected, under my eye(no bottom lashes),dark blue mark,under my nose dark blue mark along with what looks like wrinkles,thinner upper lip,thinner right cheek area then the left,line or wrinkle type on my chin(or what I like to call it misplaced dimple). I am 36 now and don't intend on surgery. I've learned to deal with it.(I've had some minor stuff done like collagen and fat cell injections) I am quite lucky compared to some of the people I've read about and I do know some things about Rombergs. If I can be of any help to anyone please let me know. Bless you all.
17) 04/03/00 20:06:18
Name: Marilyn Location: E-mail: Comments: Stephanie, Your e-mail address is not complete. Hope you will correct it so we might correspond with you.
16) 04/03/00 19:32:58
Name: Stephanie Location: West Palm Beach, Florida United States E-mail: srosenbeck Comments: I am a victim of Rombergs Disease
15) 04/01/00 12:44:17
Name: jerilynn Location: Holland, MI USA E-mail: email@example.com Comments: My son Dylan began developing coup de sabre at and a half. We got the diagnosis of localized schleraderma right away but no treatment except cortisone cream and a course of antibiotic in case Lyme's disease was a factor. Last July we began Methotrexate yet I can't tell if it's stabilized or not. Dylan is almost 7. His eyes are slightly uneven now and that's what worries me most. No dental problems at this point. Looking at the pecture of Jenny at age 8, I'm sure he has Parry Rhomberg's. He gets headaches when he is overtired but much less frequently than when he was 4. Fortunately he is a precocious athlete, outgoing and bright and he doesn't get teased. I do worry alot about the future when I see Jenny's picture at age 12. Must surgery wait until the eyes are so uneven? My faith in God wavers when Dylan asks: "Why did God make me this way?" My only answer is that maybe he had too many assets before. I often marveled at the perfection of his appearance before the disease hit.
14) 03/29/00 16:40:36
Name: CHRISTINE Location: CONCORD, NORTH CAROLINA USA E-mail: CHRISTINEWALSH@EXCITE.COM Comments: My oldest son has Parry Rhomberg. He is now 19 years old. I just found this web-site I thank God for it!!
13) 03/22/00 05:20:21
Name: Tom Location: Spencer, Iowa USA E-mail: firstname.lastname@example.org Comments: I've posted a message somewhere else on the net but that was before I had an address on the internet so you could reach me. My case is rather mild compared to many. I'm 46 and have had a slight disfiguring on the left side of my lower lip for about 15 years. It has gotten a bit worse but some people don't even notice. About 12 years ago I noticed severe atrophy in my right leg. The calf muscle called the Gasrtoc Nemious ( I think I spelled it right just vanished. I have had a bit more trouble with that leg since but it is likely from favoring it too much. I walk well and swim 1/3 mile daily. I've been to the Mayo Clinic and University Hospitol in Iowa, City. After a long list of about 10 neurologists I decided I have it so I'll live with it. If anyone can tell me I need to know if and when this runs it's course, if it does or can I still expect more atrophy somewhere. I may have a spot on my right pectoral muscle but I'm not sure. Please E-Mail me and I would like to thank some of the people who have written in the past. I want to write back in the worst way but currently I'm finishing a degree in psychology and for years have been to busy to do much. I graduate soon then I'll have more time.
12) 03/13/00 18:12:07
Name: Raylene Location: Peabody, MA USA E-mail: email@example.com Comments: I was diagnosed at the age of 30 in 1991 with romberg I was glad to learn that there are other people out there with my condition i am interested in learning more
11) 03/11/00 23:38:50
Name: Location: CANBERRA, ACT AUSTRALIA E-mail: firstname.lastname@example.org Comments: Just found this site - terriffic !! I was diagnosed with Rombers in my late teens, I am now 47. had a lot of plastic surgery in my late teens and mid 20s, my condition is just part of my life it was great to read stories from others. Feel free to drop me an email. Les
10) 03/06/00 19:54:28
Name: karla Location: painted post, n.y usa E-mail: Comments:
9) 03/05/00 19:47:41
Name: michele Location: levittown, pennsylvani E-mail: email@example.com Comments: i am a 55 year old mother of 2. i was diagnosed with rombegs yesterday 3-4-2000 after 20 years of searching for answers. i would love to talk to anyone about this
8) 03/01/00 17:09:17
Name: Rhonda Location: Cleveland, Tn. U.S.A. E-mail: firstname.lastname@example.org Comments: I also have Parry-Romberg disease since I was 5 years old. I would like to be added to your list.
7) 02/29/00 19:33:13
Name: lynn Location: waianae, hawaii E-mail: email@example.com Comments: HI MY DAUGHTER IS 12YRS OLD AND HAS ROMBERGS IM LOOKING FOR SOME ONE TO HELP ME SHE HAD SURGERY DONE IN 09-13-99 IN CHICAGO SHRINERS I WANT TO KNOW MORE ABOUT THE DIEASE PLEASE CALL ME AT YOUR CONVIENCE TIME I REALLY NEED HELP SHE IS SO YOUNG AND IT IS ALL OVER HER FACE AND BODY 808-696-1290 PLEASE REPLY OR WRITE LYNN 87-153 PALANI STREET WAIANAE HAWAII 96792 THANK YOU MUCH ALOHA
6) 02/01/00 01:28:42
Name: Audrey Location: Glenview, Ill USA E-mail: firstname.lastname@example.org Comments: My name is Sandra and I am writing this message again for my sister Audrey. She too has Parry-Rhombergs but, she is in the rare 2% that has it on both sides of her face. She also suffers from several other ailments that have afflicted her body due to this syndrome. She lives in Chicago Illinois and would love to get in touch with others that have Rhombergs Syndrome. The info you could swap would be astonishing and she could use the support. Awaiting your responses!
5) 01/31/00 11:34:30
Name: Rudy Location: Milford Haven, Pembs. UK E-mail: email@example.com Comments: Hi there It has been a long time....just passing by. Happy 200!! Rudy
4) 01/18/00 15:16:54
Name: Theresa Location: Chicago, Illinois USA E-mail: firstname.lastname@example.org Comments: Lovelene, Happy to meet you. Do you have an e-mail address where we could write to you at ? Please let us know. Take Care, Theresa
3) 01/17/00 03:19:57
Name: Lovelene Location: Las Pinas, Philippines E-mail: Comments: I was diasgnosed to have this rare form of disease when I was still 5 years old. While I was growing up the defect became more apparent making my right side of the face smaller than my left even my nose is smaller on the right side. I was told that there is no treatment for it and that i will have to undergo reconstructive surgery when i turn 18. At present i have undergone 2 lipofilling procedures and so far so good. My plastic surgeon told me that i will undergo plastic surgery for the repair of my nose after a year. I am looking forward to that.
2) 01/12/00 04:30:59
Name: Shonda Location: toccoa, georgia usa E-mail: email@example.com Comments: i wish i could have found some pictures to relate my face and see if there were any similarities. but i don't suppose i would want my picture on here either .it was really nice and very helpful
1) 01/01/00 00:57:00
Name: Dee Location: Langley, British Columbia Canada E-mail: firstname.lastname@example.org Comments: Looking for info on Parry Romberg since my 10 year old daughter has just been diagnosed with this. Originally they thought it was linear scleraderma.