December 18 2004 at 04:13:47 GMT
| Comments: My 44 year-old sister noticed 3 years ago that her left cheek had begun to shrivel, and she started having painful spasms under her left jaw. After a battery of tests, including an MRI, at our local hospital, she was referred to the Mayo Clinic. She received word from there yesterday that she has Parry-Romberg. I've noticed from the comments on this site that many noticed symptoms at an early age. I'm wondering if there are others, like my sister, who began experiencing symptoms in their 30s, 40s, etc. I'm so grateful for this connection. Thank you to the founders! |
November 25 2004 at 18:58:43 GMT
| Comments: hello everyonei missed talking to you all |
11/21/04 GMT
| Comments: hello everyone sorry i was off the computer for a few months here is my new email address bingokid114@aol.com i hope to here from you all thanks kim |
Nov 18, 2004 GMT
| Comments: My 17 year old daughter was just diagnosed with PRS last week. For years her face has been discolored and looking back I have taken her several times for various symptoms of this disorder. Finally it has been given a name... |
November 11 2004 at 04:11:14 GMT
Comments: Hi,
I would like to have my email address added to the mailing list for this site. I am afflicted with the disorder, and would like some information. Thanks!
Mary |
10/22/2004 GMT
| Comments: I really don't have any comments yet. i do find this interesting, and i would love to get more information. |
October 17 2004 at 03:50:49 GMT
| Comments: Hi to everyone who's lucky enough to have found this website like I have. My name is Nicky and I was born in the Caribbean. From the age of 6 I notice the left side of my face was becoming less chubby than the other. Yrs later it progressed slowly even causing me to lose the hair on that side of my hairline. I'm now 34 and just finding out that's why I had so many migraines and had so many panic attacks. I went to a specialist 10yrs ago who was clueless and insisted it was just a little pigmentation (it's darker in the sunken area). He couldn't even tell that area was sunken until I pressed both sides of my face and the left side had no bounce to it. I now live in the US and was suprised when the doctors here had no idea what it was either. I couldn't afford to go searching (doctor to doctor) for answers but as it turned out I got answers cheaper than I expected ~ through this website. Anyway I have long gotten over my insecurities and am able to smile like I did when I was 5 again. I haven't been "diagnosed" and have to hope of making it better but thanks to this site I now KNOW what it is that's haunted me all these yrs. That in itself has helped me live again! |
24/09/04 GMT
Comments: I am researching Rombergs syndrome in relation to children and found your site very infomative. I am a nurse with extensive experience treating H.I.V. related facial lipoatrophy with New-Fill, a poly-l-lactic acid injection with thickens dermal tissue. If anybody is interested in information about this please contact me by email, address above.
Odile R.N. |
09/13/04 GMT
| Comments: I am doing research for a friend living in South Africa. Her seven year old son has Rombergs. There are very few known cases in SA. I am trying to find a doctor in the USA, for assistance. |
September 13 2004 at 05:25:24 GMT
| Comments: Hi there! I came across your site while gathering information on different types of facial conditions for CleftClub.com 's link directory (cleft lip and palate support site). I'll be adding your site to the directory :). |
September 07 2004 at 23:24:57 GMT
| Comments: My son Thomas has been diagnosed with Perry Romber, he is 7 yrs old. Has anyone ever heard of a treatment or something to help stop the progression. We have a very good craniofaicl specialist, but he's says all we can do is wait and see. |
August 13, 2004 GMT
| Comments: My daughter is 9 years old and was just diagnosed with Parry-Rombery Syndrome. It has taken us 4 years to find a dr. who could tell us what was going on with her. She started at age 5 with loss of pigment on the left half of her head. They simply told us that is was segmental vitiligo. Then 2 years later her left ear started changing shape and seemed to not be growing like the other. Now at almoast age 10 her ear is paper thin and is half the size of the other. We have been told that this could continue to change her face or not. This waiting game is not any fun. Bless all of you for what you have faced and are still facing. |
July 29 2004 at 19:52:28 GMT
| Comments: Claire, Please tell your boyfriend about our group. We would like to have him join us. Thanks, Marilyn |
July 29 2004 at 09:48:34 GMT
| Comments: My boyfriend has Rombergs and finds it really hard to talk about it so i undertook my own research... i would like to wish all those living with this disease the best that life has to offer. |
June 25 2004 at 11:06:30 GMT
06-23-04 GMT
Comments: Hi, My name is kim and I am 36 years old I have had Rombergs Disease since I was a kid. I have had 7 surgerys so far. I'd like to here from you all. Thank you for your time.
Sincerely,
Kim |
June 04 2004 at 17:09:04 GMT
| Comments: My son has just been diagnost with Parry Romberg Syndrome, he is 6 years old and showing some signs. |
03/06/2004 GMT
| Comments: God bless all sufferers and their families.You are in my thoughts and prayers. |
May 03 2004 at 01:33:46 GMT
Comments: Hey Terry,
It's between your birthday and passing. You are forever in my thoughts and memory. Keep watch over us with rombergs. There are still days that are a struggle and days that are wonderful. with all my love, adele |
April 20 2004 at 04:15:36 GMT
| Comments: I am a Medical Doctor and got interested in this disease because I have a patient that has it and I had never heard about it before and decided to start studying about it in order to better understand her. |
April 02 2004 at 17:01:03 GMT
Comments: My son Martin was Diagnosed with Linear Scleroderma at the age of 7. Since then a deep indentation has occured on his forehead and the line has continued down his face.His lower lip is partially affected along with his eyelid.An Mri shows a line completely thru his Cranium and it appears to be attacking his brain.It has been suggested that I research Romberg's.< I wrote to a Specialist On=line and he suggested that I start researching Rombergs as some atrophy is becoming apparent. I have no support, I get no answers from Dr's only a wait and see until it goes into remission and to watch for neurological symptoms.
Any emails or contact would be very helpful to me. It would be nice to know that there are other people out there dealing with a chronic disease that few people understand. It would also be nice to find someone for my son to talk to He is now 10 and is being teased and bullied at school. He needs people with similar experiances to talk with.
Thank you
Lisa and Martin in SLC Utah |
April 02 2004 at 05:43:42 GMT
| Comments: I have suffered from Romberg's disease. The first visible signs appeared in the 1st grade. Even in elementary school, I knew something was terribly wrong--facial atrophy, migraines, panic attacks, ete. My parents basically ignored it and never took me to Dr. until high school. A lot of good that did. Anyway. I was 34 when a cranial Dr. in Cleveland, Oh. looked at me and said it's something like Romberg's, but he wasn't sure. He had read about it a long time ago, but couldn't really remember anything. I tried to find info on it but couldn't for years. Then one day I looked on the internet and BOOM--there it was. Everyone looks like me. I am now 44 and still struggle with feeling like a freak. It doesn't give me comfort to know that other people have to live with this disfiguring disease. But, I am glad you are here for us. |
3-10-04 GMT
| Comments: Hello everyone. My name is Tricia and I am from Maine. I was diagnosed last year with Rombergs disease after noticing for about 1 year that the right side of my face was changing. I was devistated at first and ended up being sent to Bostons Mass General hospital because no doctors in Maine knew much about the disease. Once in Bostons hospital they sent me to Philidelphia and there finally a Dr. could help me. I guess I have a very minor case and I am very lucky. I know have a surgery set up for the end of March and the Dr. will put my own tissue back where I have none. This will either need to be done again or if my disease is done I will never have to fdo this again. I am very glad that I found this site and wish everyone else the same luck. Any e-mails are welcome. I wouold love to talk to someone else with this disease. Wishing you all the best of luck. Tricia |
February 26 2004 at 07:57:23 GMT
Comments: Hello everyone. It seems I find myself thinking of my brother, Terry Burau every spring and wander over to your site to see how everyone is. I'm happy to see so many of you are new here and finding this unique but wonderful family. I must admit, it makes me sad to think of all they years gone by since we lost Terry. In the years since he died, I had many achievements I would like to have shared with him. I became a police officer, had my first book published, started my own company. All the things you want to call your brother and share with. These are huge milestones and I feel a loss that he wasn't here to see them. Then I find this site again and read all the new members and expressions of gratitude for having found this place. It's then that I realize Terry is still with us all in his own way. And the fact that he has directly and indirectly helped so many people makes him feel that much closer when I miss him. Thank you for that gift. I wish you all the very best.
Jim |
February 24 2004 at 13:12:43 GMT
| Comments: Hi, I am a 42yr. old male who has had Rhomberg's since I was 16. I am currently considering having reconstructive surgery. Even after living with this most of my life, I am still scared to have this done. I came across this site via a search and am so happy to find other people who have had to deal with this. I know how hard it is to live with this and want to Thank everyone who has contributed their comments. I hope that I will find some support and information that will help me. Thank You all again |
2/18/2004 GMT
| Comments: I'M A 34YR. OLD MALE WITH PARRY ROMBERG SYNDROM. I WAS TOLD IN 1987 THAT I HAD THE SYNDROM. I HAD PLASTIC SURGERY ON THE LEFT SIDE OF MY FACE. CHEEK,CHINE& JAW! |
January 26 2004 at 09:53:01 GMT
| Comments: Thank you for having my great niece on your web site. |
January 06 2004 at 20:17:27 GMT
| Comments: Hi, I've just found this site and am a bit overwhelmed. I really didn't think that anyone had the same condition as me, and that so many people have had similiar experiences. I am 30yrs old and was officially diagnosed with Romberg's about three years ago, even though I have been affected by the condition since I was three. I have other things 'wrong' with my body but I find the facial stuff harder to deal with. A visit to a neurologist today prompted me to find out more about this condition and thats how I found this site. It has been a great help that I'm not alone. |
January 01 2004 at 20:53:12 GMT
| Comments: Happy 2004! I hope it will be a good year for our Connection. Marilyn |
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