30 December 20 2006 at 03:40:03 GMT
| Comments: Lindsey,
Please write to me, there is a problem with your e-mail address. Thanks, Marilyn |
29 December 20 2006 at 01:38:30 GMT
| Comments: What a wonderful and informative website. My mother has been searching for information about Perry-Rombergs and found this page. My E.N.T. thinks this may be what I have, but didn't have much info to give me. This has helped me to understand what is happening to my face since it started changing at the age of 16. I'm 23 now, and have just now found a doctor who hasn't shrugged my atrophy off as nothing. Most doctors say that it's normal to have some facial assemmetry and don't want to research it any further. Thank you! |
28 17 December 2006 GMT
| Comments: I feel for most of your testimonials. I have had Parry-Romberg Syndrome for the last 15 years, since I was about 14 years old, never did anything about it. Recently many people and friends have been asking what's wrong with the left side of your face. I am married, live a normal life, and do not have the complications like what is written in the resource and testimonials over the internet.
Can anyone please assist in providing a specialist or doctor to see in Australia, Sydney, to save time in finding them?
Thanks for your website and information, i feel better more is written about my condition now. |
27 August 29 2006 at 20:54:54 GMT
| Name: Parminder Singh |
E-mail: psuppal@shaw.ca |
| Location: Calgary, Alberta, Canada | |
| Comments: I was told maybe I have Perry Romberg back in 1992. The doctors are not sure. I don't have any balance & have hemefacial atrephy on the right side of the face. Can anyone tell me which direction I should go in to find out if I have it for sure, since its very rare & doctors are lost & given up? |
26 August 24 2006 at 09:12:49 GMT
| Comments: My husband has rombergs and seeme to be having short term memory troubles.....is this a problem for anyone else? If so, what have been the causes, treatments???? |
25 August 20 2006 at 19:36:25 GMT
| Comments: I was diagnosed with rombergs syndrome and people have just starting noticing and i feel very upset! |
24 August 15 2006 at 21:10:3715.8.2006 GMT
| Comments: Ahoj, neumím anglicky. Ze seznamu zemí jsem zjistila, že je zde zaregistrován jeden případ Rhombergova syndromu i z české republiky. Je mi 33 let a trpím stejným syndromem. Do dnešní doby jsem si myslela, že jsem jediná z české republiky. Moc by byla vděčná, kdyby se mi onen "čech" ozval, protože nemám absolutně nikoho s kým bych si o této nemoci mohla popovídat a zeptat se na zkušenosti někoho jiného. Ani lékaři v naší zemi, nemají s touto nemocí žádnou zkušenost. Nebo aspoň v mém okolí. Prosím z celého srdce, aby jste se mi ozvali. Nebo kdokoli jiný, kdo umí česky. S pozdravem Jitka |
23 10-08-06 GMT
| Comments: hi, i came across a case of parry romberg syndrome.I being a anaesthetist was given the challenging task of giving anaesthesia for the cosmetic repair of this patient.It was indeed a tough task of securing the airway in such patients,which was done with the help of fibreoptic scope.Post operative also airway was the main concern but it was uneventful.Basically i want to highlight that airway management is the chief consideration for the anaesthesiologist.Thanks. |
22 August 09 2006 at 04:49:11 GMT
| Comments: Can someone pls email me the list of doctor's with Romberg's experience? esp. California Bay Area. |
21 July 31 2006 at 11:59:34 GMT
Comments: Hey, I have been looking through the site and am astonished by the anount of people who actually suffer from PRS. I was diagnosed when I was 15, it started with a tiny thumblike print on the top of my head and has no progressed to being a sausage shape on the side of my skull. I am extremely lucky that it hasn't progressed to my face, However, hairdressers do comment on the fact that I have a bald patch!! I then have to go through and explain the whole story! luckily I have so much hair that it stops the general public passing comment!
I have only really started looking into PRS, at 15 I wasn't very interested and didn't really want to know how it might affect my future. As a 21 year old I want to know everything, you soon realise with age that life is very short. Thank you for the information and stories, they gave me some piece of mind to know that even if my PRS does progess life still goes on.
Thank you again!!
Carly
xxx |
20 June 09 2006 at 11:50:43 GMT
19 May 15 2006 at 22:54:46 GMT
| Name: Adele |
E-mail: |
| Location: | |
| Comments: areallybigword I MISS YOU! |
18 May 9 2006 GMT
17 4/28/06 GMT
Comments: Dear Terry, I wanted to wish you a happy birthday. I hope you know how much you are still on my mind and in my heart. There is a never a day with out you in it, even though you are gone you remain my best friend..
All my love, Your little brother..
Greg |
16 4/28/06 GMT
Comments: Happy Birthday my dearest friend.
Love you always! Adele oxoxo |
15 04/28/2006 GMT
| Comments: Happy Birthday Terry! Every year at this time I think about you (we share a birthday) You truly are an angel in heaven. :-) |
14 April 06 2006 at 17:26:21 GMT
| Comments: Diagnosed with Parry Romberg Syndrome and am looking for support and / or information about symptoms. |
13 04/01/2006 GMT
12 March 31 2006 at 05:00:07 GMT
| Comments: Hey kelly I was in school a few days ago and my teacher passed out these Reader's Digest books and said study them I will give a test well im like oh man till I flipped through it and saw your story and read it and almost cried because even thought I dont have what you have I almost cried because I get made fun of all the time and for no reason and I thought those kids who made fun of you were wrong you have a reason and you are not ugly so if we were allowed to beat up kids I would have but keeping it to yourself was a good idea and I want you to know that you are my idol because want you have gone through. |
11 March 25 2006 at 11:24:39 GMT
| Comments: i am a nurse, working the night shift. kind of quiet right now so i picked up a copy of readers digest and read the story of kelley sperry. decided to go on line and look up parry-romberg syndrome and found this website. just wanted to say- kelley you are a beautiful person and i hope all goes wells for you!!! |
10 March 07 2006 at 03:48:33 GMT
Comments: Norma,
Please write to us again. There is a problem with your e-mail address. |
9 March 07 2006 at 02:05:15 GMT
| Comments: Im 27yrs old and I have romberg's
I have never meet anyone alse or seen anyone alse until today. I want to know more about doctors in my area. last time I went the two doctors that look at me had no idea what to tell me or anwer my questions. |
8 February 24 2006 at 00:17:35 GMT
Comments: HI,
I HAVE HAD THIS SINCE 2001 AFTER I HAD MENINJITIS AS AN ADULT. IT DEVELOPED FROM MY DAUGHTER STREP THORAT. IT GOOD TO KNOW I'M NOT THE ONLY ONE. I THOUGHT SOMETHING WAS WRONG WITH ME. EVERY DOCTOR I SEEN COULDN'T FIGURE IT OUT. BUT MY LAST DOCTOR FOUND THIS.
THANKS |
7 February 06 2006 at 03:18:42 GMT
6 February 02 2006 at 04:36:07 GMT
| Comments: My name is Shelby. I came to know what Parry Rombergs Disease is because of my sister. She has this rare disorder. I am not here to talk about my sister, I am here to talk about Kelley. Kelley is a beautiful girl with a great spirit. She is strong, brave, courageous, and many other things. My list about Kelley could go on and on! Everybody judges Kelley by her appearence, before they even get to know her. Once you get to know her she is a great person! Whenever you are around her she makes everyone laugh. She will make you feel better, even on the worst day of your life. It's a pity knowing what the world has come to. I am disgusted on how people judge Kelley. They take one look at her and decide not to be her friend because of her appereance. I admit, the first time I looked at Kelley she looked a little weird (sorry Kell). I actually took the time to get to know her! Most people don't. Kids are mean and cruel, by the way this is coming from a 13 year old. Yes, I think this way! Please take the time to get to know someone before you judge them. Kelley is a very special girl. I love you Kell!! |
5 01/23/06 GMT
| Comments: I`m not to good with the computer and for some reason I can`t email use. I have parry rombergs |
4 January 21 2006 at 14:05:17 GMT
| Comments: jas finished reading the article on reader's digest.This is d first time i got to encounter parry-romberg syndrome. I am an ICU nurse, in my 5 years of experience,this is d only time i got to see this case. Anyway, its not the syndrome that caught me, but i really admire families and friends like ur own for supporting each other. Always remember that u dont have to explain to others who u are or act in ways that please other people, for each of us were created by God.My prayer for you is that you know how brilliant and special you are and may you realize the world is waiting for you to bring forth all that you are in the way only you can. |
3 January 13 2006 at 19:00:28 GMT
| Comments: Thank you for your helping my friend. She found your site about 6 years ago and it was the first time she had ever seen anyone else with Romberg's. She just added her photo and I am very proud of her. |
2 January 03 2006 at 05:49:23 GMT
Comments: My warmest regards to all!
Came across an article in the RD yesterday night and indefinately made me think very deep.
To Kelley, god bless you wherever you are!
Happy New Year. |
1 January 01 2006 at 16:53:29 GMT
| Comments: Happy New Year Everyone! |
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