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12/27/00 02:21:03
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: for_piglet@hotmail.com - please up
Comments: you guys are beautiful,brave and so friendly to share your stories you touched me deeply!
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
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12/27/00 01:32:12
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12/16/00 07:30:25
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Waiting to find out results of CT scan to determine if I have Romberg's or en coup de sabre [localized] scleroderma.
12/06/00 08:10:29
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.
11/26/00 08:19:19
Comments: Greg, My love, thoughts, and prayers are with you now, and always. all my love Lisa xx
11/26/00 02:00:02
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..
11/20/00 20:43:32
Comments: Hello,
11/18/00 16:58:48
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
11/14/00 10:07:45
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11/09/00 19:58:23
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.
11/04/00 09:10:29
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10/25/00 02:37:19
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.
10/23/00 01:54:13
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
10/21/00 05:04:49
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10/20/00 16:39:39
Comments: I have Rombergs too.
10/19/00 18:01:12
Comments: Hello...
10/18/00 22:20:34
Comments: 35 yrs old. Diagnosed w/PRS in 1992m after going blind in left eye. Facial changes on right side of face only.
10/10/00 13:14:04
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
10/09/00 23:45:13
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10/09/00 16:30:47
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10/06/00 17:49:42
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.
10/05/00 14:28:40
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10/04/00 16:00:35
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.
09/30/00 07:17:52
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.
09/27/00 01:35:11
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.
09/25/00 22:43:02
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 eachothers 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 cant 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
09/12/00 23:18:21
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.
09/06/00 12:56:53
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
09/02/00 11:35:13
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.
08/29/00 14:13:36
Comments: Doreen, Your e-mail address does not seem to be valid. Please contact us again.
08/28/00 16:04:25
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.
08/25/00 17:52:32
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.
08/14/00 23:27:55
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
08/12/00 17:07:58
Comments: Yo padezco esa enfermedad y hasta hace poco no sabía ni como se llamaba, espero seguir en contacto con ustedes.
08/12/00 09:17:45
Comments: It's great to finally see people who have the same disorder as I do.
08/11/00 16:34:22
Comments: Thanks
08/07/00 17:39:01
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07/27/00 20:21:26
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07/26/00 23:43:57
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.
07/24/00 20:50:06
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
07/21/00 22:37:40
Comments: PS...... Terry, that last one was from me... Love, Greg
07/21/00 22:36:09
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 remeber 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 cant 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 eachother 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...:(
07/12/00 22:09:54
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.
07/12/00 04:36:36
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.
07/10/00 15:15:37
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.
06/28/00 20:03:31
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.
06/22/00 17:45:37
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!
06/16/00 12:35:47
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!
06/10/00 20:54:57
Comments: Have coup de sabre. Am told form of Rombergs? Depression of right forehead with baldness. Love to hear from anyone!
06/07/00 19:48:23
Comments: Well, here it is, almost a month has passed and this still doesnt 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 alot. 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 cant 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 dont 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 could'nt 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 cant. I cant call him. I cant ask anyone. There's no one that shared those memories anymore. I cant 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 wont 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,
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