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12/15/99 17:03:11
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12/13/99 19:20:43
Comments: After watching the Dr. Joy Browne show for the first time today and seeing Terry on the show, I decided to check out his webpage. I do not have this disease but I would like to mentally support anyone who does. You are truly a great group of people and may God Bless you all.
12/02/99 21:46:37
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11/28/99 04:11:49
Comments: My son may have Romberg. He has had two strokes caused by calcification on the brain. He has definate differences on the left side of the face and has occasional migraines. We are still in the beginning stages of learning. Thank you for the information.
11/25/99 07:07:45
Comments: At last people I can talk to , please anyone wanting to chat please email me, I am 34 and have had Parry Romberg since I was 5 , would love to hear from anyone love the web sight
11/25/99 06:56:57
Comments: at last someone who knows something
11/24/99 20:31:47
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11/24/99 06:51:33
Comments: I just found your site and I'm excited to explore it.
11/02/99 14:29:52
Comments: Beth,
10/31/99 00:03:51
Comments: THERESA I HAVE GOT YOUR MESSAGE THANKS FOR TAKING THE TIME TO RESPOND. I AM STILL OVERWHELMED THAT YOU GOT MY MESSAGE AFTER SO LONG TRYING. I WILL RESPOND AS SOON AS I COME DOWN TO EARTH. I AM NOW AT THE STAGE WHERE THIS CONDITION CANT BE IGNORED ANYMORE WE ALL NEED ANSWERS TO WHAT IS GOING TO HAPPEN IN THE FUTURE I THOUGHT MINE HAD BURNT OUT BUT I FEAR NOW FOR MY FUTURE. I AM GOING TO DO ALL I CAN TO FIND OUT. IN ENGLAND PARRY ROMBERGS IS NOT EVEN HEARD OF THEY HAVE NO IDEA AT ALL YET PREPARED TO OPERATE WITHOUT KNOWING THE FINAL OUTCOME.
10/30/99 21:33:05
Comments: My mother was diagnosed with Parry-Romberg Syndrome when she was six, and now my nine month old son is showing symptoms.
10/30/99 14:05:18
Comments: I stopped by to say hello and I wanted to say how impressed I am with your site! I am a Community Leader here in HotSprings, and I wanted to extend my hand to say welcome and to let you know that i'm here should you need anything :o)
10/29/99 16:19:01
Comments: Ann...I will re-subscribe you to our ONElist group so that you can write to the group...T.
10/28/99 22:57:44
Comments: HI EVERYONE I HAVE TRIED CONTACTING YOU BY E-MAIL SEVERAL TIMES BUT CANT GET THROUGH PLEAS TRY TO E-MAIL ME I HAVE PARRY'S SINCE I WAS BORN I AM 42 I HAVE HAD 4 OPERATIONS TRANSPLANT FROM MY BACK. IT HAS NOW COME BACK TO HAUNT ME AGAIN PLEASE TRY TO CONTACT ME OR LEAVE A MESSAGE ON YOUR WEB PAGE
10/25/99 15:12:32
Comments: NO COMMENT AT THIS TIME
10/19/99 23:10:54
Comments: I found your web site via Sherry Messick's site.I also have found out recently that I have Scleroderma... I have been involved with the net for 3 years now, and have started a web site to raise awareness about SD. I never heard about SD until I was diagnosed! Thank you and God bless! Elizabeth
10/18/99 17:42:00
Comments: The Rombergs Connection is a God-send. I often feel as if I'm reading my own story. So many similarities! I'm eager to hear from even more people - as we know, when there's a group of people experiencing the same thing, it's much easier to cope. It's interesting to read about the various procedures and medications being used also.
10/15/99 22:05:04
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10/15/99 07:53:05
Comments: My 9 month old grandson, Jack, has been diagnosed with Hemiatrophy. It appears to be affecting his head as well as the whole left side of his body. We have not been able to find out very much information on this and it does concern my son. My postal address is 35 Oxford Street, Timaru, New Zealand so if anyone could send me any info I would very much appreciate it.
10/14/99 01:43:37
Comments: my daughter malia is 12 yrs old and have rombergs syndrome she had a cranial facial done on 09-13-99 at shriners hospital in chicago done by DR.Dumainian northwest riverside hospital please contact us we want to know more about this progresion on rombergs aloha.
10/09/99 20:12:03
Comments: Since visiting the Romberg's connection I have received to response's. Thank you for answering and I will write to you again soon. It is hard for me to get to a computer to send back e-mail( i am at my mothers now) so if there is any one who wants to send me a letter to my home I would love to hear from you. if you e-mail my mothers address she can forward my address on to you. i would love to meet someone like myself. hope to here from you.
10/03/99 18:43:46
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10/02/99 14:47:01
Comments: I just saw a show on a local station about Romberg's disease and I decided to search the web for more information. I have had Romberg's since I was 5 yrs old. It began after my open heart surgery. The doctor's thought at first it was connected somehow to my heart condition. I plan on writing a personal story. I have printed information from your web site and want to read it before I write my story.
09/30/99 23:51:22
Comments: My 13 year old daughter has been diagnosed with Parry-Romberg yesterday in New York by Dr. Thomas Lehman. My husband and I went on the internet last night and found your site. We are starting to look at the different sections. Thank you for doing this.
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