The 2001 Romberg's Connection Guestbook

43) 12/12/01 18:30:52 GMT
Name: Greg
Location:
E-mail: gburau@kpvi.com
Comments: Dear Terry, I can not believe how bad this still hurts. I still wait for the pain of your death to pass and let me smile about all the things that we shared. Today, I told the News Director here that a good story would be on orphan diseases. I explained about how many people are affected by these and how alone they feel. I said that they should know that there are places to go to find others that they can share things with. She said it was a good idea. She wanted me to gather info and websites. Naturally I had to include Romberg's Connection. While I was doing the research I had to sit and read the new pages. I also sat and read yours. I still can't look at any of it without sobbing uncontrollably. The tribute page hurts a lot. It feels good to know you were so loved, but at the same time it reminds me of the major loss. In time it will be a place to reflect and recall what a wonderful human being, Brother and friend that you were. Right now it's just painful. Now a fast not to Steve and Theresa. sometime if you guys would ever like to talk. I would love to hear you on the phone and to talk a little. You guys were so close to Terry and I always appreciated that. Through some of the hardest years of his life you werew what he leaned on for strength. All of you in the Romberg's Connection were exactly what he needed. Thank you all so very much. The years keep ticking by Terry. It's been almost 2 years since you passed away. I imagine at this rate it won't seem like very long until I see you again. But I sure miss you. All my love, Your little brother Greg
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42) 12/06/01 03:27:28 GMT
Name: Shandra
Location: Memphis, Tn
E-mail: hope41171@yahoo.com
Comments:
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41) 12/01/01 22:54:35 GMT
Name: aoife
Location:
E-mail: smallon@iol.ie
Comments: wow, i just found this web-site and it is amazing to know that im not the only one out there with this disease.... thank you sooooo much
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40) 11/22/01 05:02:13 GMT
Name: Sherree
Location: Texas
E-mail: firehotsnw23@aol.com
Comments: I have parry romberg syndrome
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39) 11/12/01 22:37:27 GMT
Name: Donna
Location: Westminster, CO
E-mail: jdk5sperry@home.com
Comments: Just a huge thanks for all the support this connection has given to our family this past year. You have helped us through the darkest days. Kelley is 10 and has learned that there is a lot of compassion in this world. What a wonderful thing to learn at such a young age. She is learning to live with Rombergs, as we all are. Many good things have come out of this experience. Again, thanks and God Bless! Let's keep supporting each other! Love, Donna
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38) 11/12/01 13:57:14 GMT
Name: Lisa
Location: Adelaide. Australia
E-mail: jalnev@hotmail.com
Comments: To Greg and the 'Rombergs Family'.. I never met Terry....but I know how much his brother Greg loved and adored him. He was everything Greg wanted to be. I think Greg was worried Terry got all the attention when they went out singing...:) Two beautiful men who loved each other dearly.
Lisa Adelaide Australia
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37) 11/04/01 06:51:23 GMT
Name: Amanda
Location:
E-mail: mandbolin@hotmail.com
Comments:
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36) 10/31/01 20:00:41 GMT
Name: Greg
Location:
E-mail: gburau@kpvi.com
Comments: You know what? I am so sick and tired of hearing about people picking on someone because of this disorder. My Brother had it and he went through hell because of it. He had to struggle with self doubt his entire life. He let it get to him until he became a shut in. Then he finally said " NO MORE ". He let people say what they wanted to say and carried on with life. I was never that polite. If I ever heard anyone say anything to him that was rude, they had to repeat it from the seat of their pants, because I would not stand there and listen to it.
You people have so much to give in life. You should be so proud of who you are. Terry, in my opinion, was still a very handsome man. He had a heart of gold. I can live forever and I will never meet another him....People should treasure you for who you are.. It's the most important thing about you... God bless... P.S... I miss you Terry, I hope you are keeping my seat warm in Heaven......
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35) 10/19/01 14:09:45 GMT
Name: Annette
Location: Detroit, Michigan
E-mail: SgtBooks@att.net
Comments: Wow, this is difficult... Im 35, and I was diagnosed with Perry Rombergs in 1997 although I have had it since I was 9/10. My brothers always picked on me about my "crooked chin". It wasnt until 1997 that I wanted to do something about it. So I went to a maxifacail surgeon and have had two reconstructive surgeries since. I dont feel as though the turnned out as well as the could have and am considering a thrid surgery. Up until yesterday, I thought I was alone in all of this, I didnt realize that there were others out there going through the "same" thing.
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34) 09/21/01 22:01:09 GMT
Name: Vicki
Location: Mesa,Az.
E-mail: headlady517@yahoo.com
Comments: I have just learned I have Rombergs, I'm tring really hard to deal with this,I got it from a Bad car accent. so i would like to know more about whats happing to me..
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33) 09/01/01 19:53:31 GMT
Name: siomara
Location: CA
E-mail: xiomy200091745@yahoo.com
Comments: I have Romberg's and have had surgery. Please contact me if you would like to meet me. I live in Hacienda Heights, CA and I have had surgery.
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32) 08/27/01 13:16:19 GMT
Name: yolanda
Location: tampa
E-mail: floridacasas@aol.com
Comments: remember Isaiah, I thought I would say hi. things are in God's hands. I hope everyone is well.
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31) 08/16/01 16:15:11 GMT
Name: Petra
Location: Colorado
E-mail: centennial80121@yahoo.com
Comments: I also have Rombergs and am 58 years old. I read an article in the local newspaper and was very surprised and curious about the connection.
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30) 08/15/01 22:47:01 GMT
Name: Nicky
Location: Ireland
E-mail: nickaus1@yahoo.com
Comments: Good site.
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29) 08/13/01 15:45:57 GMT
Name: Theresa
Location: Chicago
E-mail: auntie_5@yahoo.com
Comments: Just wanted to make sure that everyone had the link to Kelley's story: http://denver.rockymountainnews.com/kelley/
Good job sweetie! Theresa
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28) 08/12/01 18:12:51 GMT
Name: Bob Ph.D
Location: Colorado Springs
E-mail: rmelamed@uccs.edu
Comments: Hi, I became interested in Rombergs (and first heard about it) after reading a newspaper article about it. I study how cells live and die on a molecular level and how this impacts on health. I also am a strong supporter of medical marijuana. The recent scientific literature shows that our bodies produce marijuana-like compounds that control most of our basic body functions including pain and the immune system. Having spoken with many people suffering from numerous diseases, marijuana has miraculous effects for many of them. Relavent to Romberg, marijuana controls epileptic seizures, multiple sclerosis pain, wasting syndrome,and migraines. Most doctors are not familiar with the modern literature. Does anyone have knowledge of its effects on Romberg?
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27) 08/11/01 16:49:17 GMT
Name: Robin
Location: Lakewood, CO
E-mail: dasch11@yahoo.com
Comments: I just read the wonderful story in the DenverPost/Rocky Mt. News Saturday edition about one of the children affected by Romberg's. I wish to send them my love and prayers and to let them know that not all people think that they are so different from the rest of the world. We all have troubles, although some seem trivial compared to what the Sperry family are going through. My heart goes out to Kelley, her mother, father and both brothers. I can not imagine what heartache it must be to have such a thing happen to your family. I hope that someday, soon, they can find peace with what has been dealt to them and that they love Kelley unconditionally, she is a beautiful girl...maybe not in her mirror but in her heart...Kelley girl this is for you...let your inner beauty shine and those around you will love you for who you are not what you look like! Again my prayers are with this incredible family, God Bless everyone!
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26) 08/02/01 18:13:39 GMT
Name: Letty
Location:
E-mail: lettyolvera@yahoo.com
Comments: My sister suffers from this. She is 23 years old and her entire life has been shattered by the complex she carries as a result of her deformities. Although others tell her than the dents in her face and the deteriorating tissue is hardly noticible, she has had severe psycological consequences. She does not date, has never had a boyfriend, rarely visits malls or goes out of the house. It seems that the only times she goes in public are to doctor visits. It's heart breaking to know that someones life is a daily nightmare. Although she has been taking Paxil for depression (and it has helped a bit) she is still searching for a doctor or a new break through that will give her hope. If anyone can offer advice or support to her e- mail me and let me know. Thank you and thank you for this wonderful web site.
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25) 07/21/01 03:27:59 GMT
Name: liz
Location: waltham, massachusetts
E-mail: ejtaylor@mediaone.net
Comments: thank you so much for being here, i feel so much better now knowing more about rombergs and i feel that i know all of the persons from the personal stories.
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24) 06/09/01 23:59:43 GMT
Name: Hiedi
Location: Wyoming
E-mail: suga_andspiceoranythingnice@yahoo.com
Comments: Hi i'm heidi I was diagonosed when i was 13 years old but it progressing between the ages of 4 and 5 years old. I was woundering if there was anyone else out there my age that has parry romberg's syndrome. I am 18 years old and just wondering!!! thanks heidi
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23) 06/09/01 17:22:57 GMT
Name: Marilyn
Location:
E-mail: rombergs@hotmail.com
Comments: Hi Jurdy, Please write us again at this address (rombergs@hotmail.com). There seems to be a problem with your e-mail address and I can't get back to you. Marilyn
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22) 05/15/01 15:49:53 GMT
Name: Greg
Location:
E-mail: gburau@kpvi.com
Comments: Dear Terry, It was one year ago that you left this world. I was thinking this morning, with you living in Regina last year, Even if I knew you would die that night I could not have left home in time to say good bye. I know it's a weird thought, but it's one that I had. In about 9 hours, last year on this date you would pass away. After a day of riding bikes and swimming with Laurissa. At almost this exact time you called me last year on the 15th. I was busy and said I would call you back. I tried all day and never got ahold of you. The last thing we said was we loved eachother. Then life went on. The next day I was getting ready to go fishing when the phone rang. Somehow I knew it was horrible news. I remember looking at the phone and feeling odd. Then Laurissa told me that you had a heart attack and you died. I felt my life spin out of control and away from me at that moment. Everyone keeps telling me that the pain will fade away. I just don't know how it ever will. Most people have a support network, they have a lot of people that they know and love. I had you. Most people had a secure home life that they grew up in, one house, one neighborhood, one set of school freinds. I had you. There is no one to share old memories with, the memories were just yours and mine, now they are just mine. I was thinking the other day about that time we had to live in a garage. We were young and dumb and both of us quit our jobs and that's where we ended up. I was 15 and you were 17. It was in Minnesota,do you remember? God, how hard was that? It was miserable. But somehow I look back and it wasn't miserable at all. It was just life. Life led us so many places and put us through so much. I want you to know though. I would not trade one of the great times or one of the hard times for any other memories in the world. It gave me a chance to know you better than anyone. That was a gift to me from God...... Mom, Brian, Dad, Barb and Jim all say Hi.. We all love and miss you. I miss you so bad that I don't know how to handle life sometimes. But I am trying...:) I love you and miss you forever, Your Little brother, Greg
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21) 05/15/01 02:20:40 GMT
Name: Manuel
Location: Argentina
E-mail: ferpuebla@ciudad.com.ar
Comments: Dear friends I'm writing this letter just to share my feelings regarding a special moment. It's going to be one year since our dearest Terry Bureau passed away. Exactly one year ago he physically left this world; but I am glad to see that he is still among us, dwelling in our hearts. Of course, there are endless things I'd have loved to ask him and share with him; I regret not having talked about them with him. Humans for some reason, always take the loving ones for granted... I never thought death could be so tragic, so ultimately strict, so cold. For that very reason, I love you all. I remember that day as if it were yesterday. That morning I checked my e-mail after a few days of not haveing spare time to do it, and I got that terrible piece of news. I felt very sad for some time, but after a while,Terry seemed somehow to "stick" to me in a different way; a more intimate way, a spiritual connection, something I was able to feel (and still am). Let the might of compassion arise to bring up welfare to us. To the memory of a good man, all efforts are to his tribute.
Your friend Manu ps: Terry I love you. :O)
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20) 05/14/01 18:42:43 GMT
Name: adele
Location:
E-mail:
Comments: Dearest Terry, May the Lord love you in the comfort of his hands on this day. Miss you-----adele 5-15-01
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19) 05/12/01 16:23:31 GMT
Name: Tena
Location: Fargo, ND
E-mail: tsoulkiss@aol.com
Comments: I was very excited to hear that I'm not alone! I've never seen or heard of anyone else with this condition.
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18) 05/05/01 08:58:20 GMT
Name: Lisa
Location: Adelaide. Australia
E-mail: jalnev@hotmail.com
Comments: Dear Greg, I wanted you to know that my thoughts are with you. During Terry's birthday, the anniversary of his passing, and your birthday. I wish things could be different.I wish he was still here, and I wish that we were still together....but most of all, I wish you love and happiness. Take care sweet man. Lisa xx
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17) 05/01/01 01:15:39 GMT
Name: Daniel
Location:
E-mail:
Comments:
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16) 04/30/01 15:07:19 GMT
Name: Greg
Location:
E-mail: gburau@kpvi.com
Comments: Happy Birthday Terry!!!!! Well bud, it's your birthday. I am so heartbroken that you aren't here for me to tell you that I love you. I sat around all weekend thinking of the things that we shared through out life. Do you remember when we were little kids. You climbed a tree, chasing a squirrel and you grabbed his tail and threw him down to me. I was only 6 years old and didn't know that catching it was not too smart. It was a scary experience. Now, it's just a great memory. I can still hear you laughing as the squirrel bit the heck out of my hand. Then there was the time that you were pushing me on the school gate. It was a blast, until it hit the stop and I slammed my head on the fence and needed 4 stitches to close the cut. There was also the trip over the rockies on a train we hopped. It was cold and miserable, but it's something I will always treasure. Then there was the time you and I didn't see eye to eye and we got into a arguement. It was the only time we ever came to blows. You hit me then I hit you. We screamed at each other and you stormed into the house that we shared. Then, about 15 seconds later you yelled for me. I thought we would continue the fight. Instead, you were standing on the porch with two beers. You cracked one and I opened the other. We both sat on the rails of the porch and talked and worked it out. It was proof to me of how tight our bond was. Even though we were so pissed we worked things out and it never happened again. It also proved to me what a great man you were. I was ready to kick your hind end and you were ready to work through it. And that was the right thing to do. I loved you more after that day. I know you remember all those things and a thousand more great times. I just wanted you to know that I remember them too. They were and always will be the happiest days of my life. I miss you Bud, I hope God's treating you well... All my love, Your little brother, Greg
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15) 04/22/01 19:12:40 GMT
Name: Sue
Location: Miami, Florida
E-mail: sfniles@BellSouth.net
Comments: I would like to become a member of the Romberg Connection. Please give me details. Thank you. Sue
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14) 04/09/01 15:58:05 GMT
Name: Tammy
Location: Alberta, Canada
E-mail: tfleming@wolfcreek.ab.ca.
Comments: I have a e-mail address now and would be very happy to talk to any one with this condition. I am going to have fat injections to my forhead and nose next month and am a bit nervous. Can anyone who has had this done tell me how the results were? By for now.
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13) 04/08/01 12:20:04 GMT
Name: Brian & Cindy
Location: Tavistock, Ontario, Canada
E-mail: brian.larsen@sympatico.ca
Comments: Our 9 year old daughter Emily, has been diagnosed (although she is being sent for a second opinion) with Rombergs syndrome. Cindy and I are quite anxious to discover a remedy (if possible) to this condition. She has had certain charactoristics since birth, but in the last year or so, she has shown more signs of Rombergs (we had not even heard of Parry Romberg syndrome till two weeks ago)
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12) 04/02/01 21:59:01 GMT
Name: Tammy
Location: Alberta, Canada.
E-mail:
Comments: I was diagnosed 4 days ago. I was about six years old when the desease started. I am 31 now and have been told all my life that I was alone and no one new what was wrong with me. I am setting up a email address so that I can talk to you all. Be back soon.
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11) 03/29/01 15:29:33 GMT
Name: Rose
Location: Hertfordshire, England
E-mail: rosemary.claydon@ntlworld.com
Comments: I have found all of the stories a great help.I wished i had searched for information on rombergs sooner.
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10) 03/08/01 19:40:37 GMT
Name: Greg
Location:
E-mail: gburau@kpvi.com
Comments: Terry, I still miss you and think of you every day. They say that i time this feeling will calm down a bit. I really don't think it will. It's been almost a year since you passed away and it hasn't faded at all. There is nothing that I do in life that doesn't remind me of you, and there's nothing in life that happens without me wanting to call you and tell you about it. I hope God knows how lucky he is to have you in heaven. I sure know how lucky I was to have you on earth and have you as my Brother. There's a song out right now that makes me miss you every time that I hear it. The chorus says.. One more day, One more time, One more sunset maybe I'd be satisfied, But then again, I know what it would do, Leave me wishing still For one more day with you... I have learned one thing Terry, If I had 39 years with you or 139 there's no way it would have ever been enough. I love you Bud, I miss you beyond belief... All my love, Your little brother, Greg
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9) 03/08/01 02:29:16 GMT
Name: Marianne
Location: Sydney Australia
E-mail: jumagune@pnc.com.au
Comments: Hello, My husband was diagosed with Parry Romberg's in his early 20s during the late 1970s. While there appears to be a medical disinterest in the condition - at least from our perspective at that time..its great to see this collection of info... We're interested in joing this group. Thanks, Marianne
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8) 02/28/01 04:19:21 GMT
Name: Melissa
Location: texas
E-mail: walberthouse@earthlink.net
Comments: hello all... I have rombergs and I'm a stronger person for it... I'm sure all of you are too. God Bless
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7) 02/24/01 09:32:55 GMT
Name: scott
Location: salisbury nc
E-mail:
Comments:
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6) 02/20/01 15:50:30 GMT
Name: karen
Location: newfoundland canada
E-mail: karensmith@mail.gov.nf.ca
Comments: looking for other "newfies" with this disorder to share experiences ..... also, is or has anyone experienced chronic night sweats in relation to this disorder?
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5) 02/19/01 12:57:59 GMT
Name: veronica, md
Location: philippines
E-mail: vmagnaye@hotmail.com
Comments: i have a patient whom i think have romberg's disease. i have not had much readings and i hope you can help me with certain questions i may have in the next few days.
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4) 02/19/01 03:02:38 GMT
Name: Mary
Location: Richmond, Virginia
E-mail: MANDPBRIGGS
Comments: How wonderful it was to see all of you in the photo albumn. It brought tears to my eyes to know that by the grace of God I found this web site. I have Rombergs and I have had it unknowingly since I was 16. It wasn't until I was in my late 20's that it was officially diagnosed for me Thanks to the persistance of a great Dentist. I have had two of the econstructive surgeries one in Dec. 1998 and one in June of 2001 and there is still more to do. All of my effects were to the left side of the Face. Boneloss, toothloss, the headaches. But I am happy to say that since the surgery in June of 1999 things are looking better. I do have some discoloration of the skin on the left side but the surgery helped to fill in the sunken in look. It has been nice to have met you all. God Bless You. Mary 37 years old from Richmond, Virginia
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3) 01/16/01 07:36:20 GMT
Name: Annette
Location: Ft. Wainwright Alaska
E-mail: alex1220662@cs.com
Comments: Wow I'm just so excited about this website. I have romberg's syndrome also I just finally found out at the Army's hospital about 5 days ago. Mine started at age 4 and progressed.. I had plastic surgery when i was sixteen.. I'm 31 now and have two beautiful boys. I was always told it was a hemifacial atrophy.. But no one could ever tell me the name of the disease until I saw another plastic surgeon for a second opion on my previous surgery.. I'm glad to know that there is a support group..
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