December 18 2003 at 14:32:14 GMT
| Comments: This is my first visit here; I am a 39-year-old who has just today been diagnosed with Parry Romberg. Thank you for putting together an informative site that can help me understand the disease and it's progression. |
December 16 2003 at 23:45:57 GMT
| Comments: I visited your site in order to diagnose myself. now i am qutite confirmed that i've been affcted by this disease. |
November 24 2003 at 12:12:19 GMT
| Comments: hi my name is buddie and I am 25 and I have reason to belive that I have this disease. I have recently talked to a dermatolagist who also seems to think that this is what I have we are about to take pictures and send them to some other doctors who might know more about the disease. Any information that you can share with me would be helpfull thank you very much. |
October 06 2003 at 19:28:15 GMT
Comments: Hi Terry,
Well buddy, as with everything, life changes. I have had a great time working for NBC but, another company has made me an offer that I can't seem to turn down. I really wish you had been around while I was working in the TV business. It was the most fun that I have ever had. I did everything bud, from Broadcast Engineering to reporting. Who would ever think that I would have ended up being a reporter on NBC? I sure laugh about it.
But, like I said, now I leave all those wonderful memories behind me. I am moving on to an I.T. Managers position and it will be a good move. (I hope)
I will be in charge of Idaho, Maine and Ohio. They have 2 plants and a sales office, so it should keep me busy. I sure wish you were still around to share all the changes in life with. At least I still have this outlet, and it makes me feel like I am still talking to you, at least in some way.
If you or anyone else from here ever wants to drop me a line, feel free.
I miss you Terry....
Every day, Every minute, Every Second..............
All my love...Your little Brother,
Greg |
September 21 2003 at 09:04:03 GMT
Comments: Hello everyone, I've been worrying about my daughter often, as I see her face changing, she's 13 now, and I wonder how she really feels inside, she's had PR since age 4, and she has rt.eye uveitis, her face is becoming more sunken in on one side. I wonder if she should take methotrexate and if it would slow down the face and eye atrophy? Does anyone have any experience with this drug?
Thank you for your help.
rosa |
August 03 2003 at 09:20:14 GMT
| Comments: I myself am a suffer of Rombergs and have found reading all the stories of other sufferers very helpful. |
July 31 2003 at 02:02:30 GMT
Comments: Tricia,
There seems to be a problem with your address. Please contact us again. You are not alone in dealing with Rombergs Syndrome.
Marilyn |
7-30-03 GMT
Comments: My name is Tricia and I am 26 years old, healthy, active and now scrared. I have just been diagnosed with the disorder and I have no answers. No time when this will end and no facts on the disease. I was really glad to see this site and hope that I may speak with someone who has gone through the entire process and let me know what it's like. I am so scared and unsure at this point that any info will help. Please, someone take the time to respond.
Tricia |
July 21 2003 at 15:22:39 GMT
Comments: Dearest Terry,
Could it be that 4 years have since passed when we met in the city for the first time. I often think of that day and recall our precious time together. It's always mentioned how rare rombergs is but the wonderful and rare friendships and connection we've all made through the years are incredible gifts we all give to one another. I think we are very spirited folks who love life and we all stand tall and give this life our best shot. Keep watch over us Terry and thanks for keeping your wings over me.
with all my love,
adele |
July 07 2003 at 20:01:53 GMT
Comments: I am 30 years old. I visited your site about a year ago. I found out at age 6 that I had Rhomberg's Syndrome. I have never met anyone else with this syndrome. Your site is wonderful and I thank you for your hard work and support.
Thanks Very Much,
Michelle
Texas |
23 June 2003 GMT
| Name: Rachel & Chad |
E-mail: Email Me |
| Location: South Otago New Zealand |
URL: Visit Me |
Comments: Hi It's been a while since I have visited this site. Our son Jack has facial hemiatrophy of the left side also slight atrophy in left foot, to date he has passed all his MRI's, EEG's and Scan's with flying colours. His atrophy is only mild at present and we hope this is the way it will stay but it's great to know about this site. When Jack was first diagnosed nobody knew anything and We were shellshocked for quite a while trying to find out as much as we could. My Aunt found this site and made first contact for us, now we are connected ourselves hopefully We'll be more regular visitor's. I would still like more information about this disorder. Jack starts School next year and I worry that he will face unnecessary teasing etc: from his peer's and other's. He has started to hate the trips to the hospital for his yearly scans. My greatest day came when Jack was enrolled at Kindergarten and I mentioned his disorder to the head teacher, who promptly looked at Jack and knew what I was talking about. She has a niece in Christchurch NZ with the disorder, it was amazing to meet someone else with firsthand experience, most people have no idea and think we're making it up, especially when we say it is a very rare condition. We often wonder why us and why him, what did we do wrong. Nothing eh it's just life. So we take each day as it comes and hope for the best like everyone else and are extremely greatful for this wonderful informative site.
Rachel & Chad (Jack's Mum & Dad) |
June 13 2003 at 17:52:50 GMT
Comments: Hi All,
I am suffering from Rhomberg's syndrome. I would like to get information about this syndrome and would like to know if it can be corrected by Plastic surgery.
Thanks & Wram Regards,
Kallpana |
June 06 2003 at 04:33:50 GMT
| Comments: I have been on disability since 1/99 with Chronic Fatigue and Fibromyalgia. Examined by the Social Security Disability Dr. who was an Orthopedic Physician who noted abnormalities for Romberg's. Physical medicine doctor had noted down turned toes left foot. I asked what the deal was in my medical report about the down turned toes. Never got an answer. Since SSD Case Workers are not forthcoming with your medical reports, even when you designate you want them to go to your PCP, I went (a year later) to the office and came out with one in early May '03. That was the first time I had ever heard of this disorder. Imagine my surprise to "see" myself in so many ways going all the way back to my teens. I was adopted at nine months and have no medical history. If it wasn't enough to find the physical asymmetry in the face, imagine my surprise to realize I had been having TIAs since my teens. I am under excellent care from PCP, who until recently was with Georgetown University Medical Center, who found immediately conditions so obviously so grossly undiagnosed, like sleep apnea, chronic sinusitis, food and environmental allergies that I had never been sent to a specialist for, but past exposure to EBV, that has caused Reactive Osteo Arthritis and degenerative disk disease. Even partial reflux as a result of the Lower Esophageal Sphincter that is Hypertensive during mid respiration and swallowing clear liquid and anything with any substance. My Ischemic event a year ago, confirmed the brain lesions that are old, as a result of years of migraines that began at age 15 (I am now 49). An ENG audiology test confirmed that I was so off balance due to a left peripheral lesion. The ENG test is a test conducted where they blow cold and hot air into your ears, after you have been off of all of your meds for pain, sleep, allergies, asthma, anti-seizure medications. This for me included the Topamax (pain, migraines, sleep, sleep quality, nightmares, RLS)/ Klonopin (nightmares, Jacksonian seizures). So, not only have my MRIs shown significantly denser tissue and bone on the right side of my skull, but it has confirmed that the migraines caused numerous petechial hemorrhages as three larger hyperintensive lesions one on the left causing a significant balance differential between the right and left brain. This caused severe problems in spatial orientation.
Now, all of this stuff, you say, what happened to her face... yes, I have the hollow left eye socket and the tissue below the roots of my left lower jaw is almost sunken. I had what I thought was TMJ, but I guess not. My left jaw keeps pulling my right jaw out of line. Klonopin works rather well for this, about .5mg during the day, as I take 1.0mg PM to sleep with a lot of Topamax. The asymmetry is now so pronounced that my right eye does look as if it droops over my eyelid, where I rather like the look of my left eye, but I was heavy until the weight fell off after sleep apnea surgery. I consider my left side facial deterioration to be mild, but I don't know if I have hit "burn out" yet, as my face and jaws are still in pain and seem to be slowly changing. Interestly enough, my fibro epal from Modesto, CA who has been a faithful correspondent since we found one another on the migraine and vertigo site looking for others with Fibro, may also have this disorder as well. Sorry, this is so long, but I have been researching things for so long and trying so hard to reconcile all of these conditions I have, I try to make sure I am not just adding one more. I read the doctors' article posted in May. Again, not only do I show serum levels 4X positive for past exposure to Epstein Barr, but at age 20, I had an outbreak of shingles (Herpes Simplex II or the Chickenpox virus) and during the outbreak I actually had a loss of vision for a few seconds during that outbreak, not just the TIA type, where you have a shade pulled down over one eye. So, I was much interested in the doctors' theory that included something like a Herpes type of genesis. Sorry to be so scattershot, but I have so many things all within one little body and so many all lead back to Herpes, and many are now leading back to migraines and many back to TIAs, and brain/neurological issues..... all previously undiagnosed... HUMMMM. You have a wonderful site, and I passed this on to my ebuddy in Modesto. She hasn't been able to function for awhile and has been down for awhile, but the thought of some ideas from my docs, that her docs do listen to, and some information on this Parry-Romberg Connection site and that there is a reason that we have these physical changes and that they have a name was quite a relief. Her dentist told her she didn't floss. Wrong area.... Best to all of you and I am so glad to meet you all, if in fact I have now met some people.... Ann |
May 30 2003 at 15:20:35 GMT
Comments: We live in Birmingham, Alabama. My son was diagnosed with P.R. several years ago but I have never been able to find a doctor in this area who knows anything about it. He is experiencing symptoms again and I would like to consult with someone who can help us. Can you tell me what kind of doctor we should see and if there is anyone in this area who can help us?
Thank you. |
May 25 2003 at 18:10:45 GMT
Comments: Hello,
I would like to know if anyone knows something about a parent/child connection. My boy-friend was diagnosed with Perry Romberg a couple of years ago and we are now thinking about a baby together.
I would be very thankful about your help.
Melanie |
May 15 2003 at 21:36:30 GMT
Comments: Missing you everyday Terry. love you always,
adele |
May 15 2003 at 17:25:25 GMT
Comments: Dear Terry,
Well Buddy, it's been three years to the day since you passed away. I still miss you like I always will. I wanted to let you know something, you told me once that no matter what I accomplish in life there was one thing that I would never do. I would never be older than you. Surprise!!!! I am older than you. You passed away at 39. I turned 40 on May 10th, and you didn't even call..:( I miss you Terry..With all my heart and soul, I miss you. You are remembered though. I am getting a bunch of emails from people telling me that they remember you on this sad day. They all say they love you and miss you a lot. I guess that is the best legacy to leave behind. A world full of people that love and miss you. I hope God is taking great care of you and that he lets me see you someday. I love you Terry...
Your little brother,
Greg |
May 12 2003 at 03:50:40 GMT
Comments: I have had Romberg's since the age of two. I am now twenty-four. I first visited this site while in college doing a research paper. It was, and is, still a great site and has helped a tremendous amount of people. I just wanted to thank everyone involved in it's conception. When I was first diagnosed, my mom could only find three sentences on Romberg's. Most of it was wrong, too. But now, for those who are just being diagnosed, or are wondering if they have Romberg's, this site is a great resource.
Once again, Thank you. |
April 29 2003 at 23:02:04 GMT
Comments: Happy Birthday Terry. I don't know what happened to the one I put here yesterday, but I wanted you to know that I didn't forget..:)
I love you Terry and I miss you every hour of every day. Someday we will see eachother again, I can't wait. If there is a heaven, then seeing you again will be all the eternal happiness that I will need.
Happy 42nd Terry.
All my love,
Your little brother,
Greg |
April 29 2003 at 03:03:44 GMT
| Comments: HAPPY BIRTHDAY, TERRY........ |
March 26 2003 at 01:58:03 GMT
| Comments: Wow! It used to be impossible to find anything on the condition; now people are connecting! Bravo!
I'm 47; left side facial atrophy first noticed at age 16. Progressed markedly after each (3) pregnancy. Left eye affected; had cartilage implant in lower lid. Right sided earlobe and neck affected as well. |
March 14 2003 at 22:32:58 GMT
Comments: I will be 54 years old in March. Today this websight has told me what I have -- Parry Romgerg/ scleroderma en coup de sabre. It began when I was six years old with a white "spot" in the middle of my forehead. It eventually left a large, discolored indented scar down (more on the right side) of my forehead, and a somewhat indented bald spot from my hairline to nearly the crown of my head. My right eye became progressively more sunken in, while the eyeball itself sort of bugged out. All of this happened by the time I was 18 years old. When I turned 45 I had an aneurysm which caused a stroke in the right basal ganglia of my brain . At this time, the doctors also found a large aneurysm on my right optic nerve which they were able to clip. I have lived my whole life wearing bangs, and not ever being able to wear my hair pulled back off my face, and praying that the wind wouldn't blow my bangs. Although I'm sorry that anyone else has also had to go through the heartbreak of this disease, it is comforting to know that it really has a name, and that others know how I feel.
Bless you all for putting this info together! |
March 06 2003 at 14:53:16 GMT
Comments: Wow... That's all I can really say right now.
Steve, thank you so much for the gift of letting me see something from Terry that I had not read. I know it sounds stupid, but it makes me feel like he was still alive, if only for a moment.
Everytime that I have something exciting, or good happen to me in my life, you know who the first person is that I think of to call? That's right, it's still Terry. How insane is that? He has been gone for almost three years, but to me he is still so close. I think that's the most frustrating part of all of this. He is so clear in my thoughts and memories. He is one thought away. He is one memory relived, one memory shared, away from me. ButI still can't say hi to him. That, above anything else that has ever happened to me in life, tears me apart. You said "what an all too rare soul he was." You could not have said that more eloquently. He was that and so much more. It's so odd how life makes us different. Terry was different because he looked different on the outside and he became the most generous man on the inside.. Where it really counts. I could have kicked him sometimes for hiding, when he felt depressed about his appearance. People could talk to him for 2 seconds and they never realized again that he looked different. He had that gift. Sometimes, since his passing, I feel like hiding too. It's for the opposite reason though. I look normal, but I am afraid if someone talks to me for 2 seconds they will see the void in me. The "something" that's missing inside me that makes me feel inhuman. I feel like such a big part of me died when he did that it's impossible not to notice it. Stupid huh? I am sorry I babbled. I just want to thank you Steve, and all of you for remembering and loving and missing Terry. It helps to fill the void a little.
Love,
Greg
(Terry's brother) |
February 24 2003 at 18:47:18 GMT
Comments: I was just thinking about Terry (Burau), who I loved like a brother I never had. I miss Terry a lot these days.
I did an online search for Terry's name and found a message he posted on the Treacher-Collins website guestbook, dated early 1998...for those who didn't get the chance to meet Terry before he died, I want to share this excerpt of that posting:
"Until I saw your page, I'de never really seen anyone besides the Rombergs group who just decided, "What the heck. I think I'll tell everyone how great life is, and try to help make it better." Isn't it just a blast to make a difference? I've met my best friends because of Rombergs, and even got to travel for days on Amtrack to meet them. What an adventure! How does that old saying go? It is better to light a candle than curse the darkness? Well, we are all in the business of handing out matches. We don't need to hand out candles, because everyone has one. It's people like you that remind them to look for what they already had. It's right there in their hands, just waiting to be lit."
That was the very essence of Terry...an all-too-rare soul who was never too busy to reach out and help another person in need of a kind, uplifting word.
I miss you Terry. A lot. I'll keep lighting candles.
Steven |
February 12 2003 at 06:19:58 GMT
| Comments: It's been a while since I visited this site. I've had Romberg's for about ten years and this was the first website I found when I started looking a few years ago. I was worried my son might have it as well, but the doctors say he hasn't, thank God. Anyway, I just thought I'd say hello while I was here. |
February 8, 2003 GMT
| Comments: A wonderful site. I just discovered the name of my disorder today and was delighted to find that other people like me out there! I am a 21-year-old female, naturally concerned with her own vanity, thus, Romberg's does not help my self-confidence. The stories were touching and uplifting! |
January 08 2003 at 23:20:46 GMT
| Comments: I have Parry Rombergs, diagnosed in 1977. |
January 01 2003 at 06:07:12 GMT
| Comments: Starting a New Year. |
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