29) November 14, 2012 - 17:24
Name: Sheree Location: Bailey, Colorado USA E-mail: sewing4mysavior@gmail.com Comments: I am 56 years old and have PRS. I had surgery when I was 15 years old and that was unsuccessful. I just have continued on with my life with the help from our Lord Jesus Christ. He is the factor that gets me thru all the strange looks from people and the names that kids called me. I certainly use alot of makeup (wish I had stock in the makeup companies).
As I viewed all the people in the pictures on this website one thing occured to me....everyone seems happy even with this deformity.
The Lord sees us differently, He looks in our hearts and He knows we are beautiful, He made us.
My last thoughts are....everyone...keep smiling!!
28) October 31, 2012 - 12:17
Name: tracey Location: essex (uk) E-mail: adams212@hotmail.co.uk Comments: Hi everyone, i have been to see Prof Hutchison today (has anyone else dealt with him) He wants to do another fat graft, but using from groin area rather than having another scar across my back.. he said again no guarantees, i think i was hoping for a miracle. its a big decision do i go for it or suffer in silence,whats everones views on this?
27) October 20, 2012 - 06:57
Name: Becky Location: Uk E-mail: Becky@bluewelly.com Comments: Hi all, It's been a while since I've made contact. So thought I would drop a line and ask a few questions to if anyone can help?
Well I had a fat filling procedure oct 2011goal was to achieve some volume of fat into lower left cheek of face. All appeared to go ok, had some reabsorbtion of fat. But it appeared to leave a smoother surface., which is great!
Since this procedure, I have recently gone under a 2nd procedure for this. Although my consultant called it fine tuning now. He said that the principal of the procedure was the same as before. But this time they were using stem cells from the fat to have a permenant affect. Has anyone had this done and what should I expect with the swelling as should I worry if it goes down too quickly? I am comparing it all to my last procedure!!! Hope this finds people well x becky x prs since 2005 diagnosed x
25) September 26, 2012 - 17:34
Name: Devyn Location: Santa Fe, NM E-mail: dev34yn@yahoo.com Comments: I was diagnosed with Parry Rhombergs syndrome when I was about five years old, it is safe to say that not all people who look different are happy but in my case I have grown to be a happy 19 year old woman that appreciates the fact that I live another day every day. I have had an amazing support system and I feel lucky to have such loving people in my life. I have my boyfriend who looks at my eyes instead of my flaws and my mother who has been such an angel to me and my other family members that have supported me through everything. I am happy to know that I am not alone and that their are people everywhere that know how I feel :).
24) July 31, 2012 - 07:01
Name: Melissa Location: Australia E-mail: menticott@optusnet.com.au Comments: Wow!! I have always felt so alone with this. I was diagnosed with PR when I was 20 but had been seeing specialists since I was 13. It wasn't until I sort plastic surgery that someone final told me what it was. Yes I had two surgeries, and they did help and I felt better about myself. Now, well it depends on the day. Most day I like who I am and it doesn't matter that I am not perfect looking. I have a beautiful husband and three adoring children who all see me as perfect. That should be enough. Just working in a primary school and those dear sweet innocent children who notice any abnormality, say things, sometimes gets to me. So thank you all for sharing your stories, it is great to know that I am not alone and that we are beautiful people no matter what. I try to think of it as being special and rare- most days.
23) July 19, 2012 - 04:34
Name: tracey Location: essex,Engand E-mail: adams212@hotmail.co.uk Comments: Hi I am Tracey I am a 46 year old.i have had prs since I was 18 I am now 46.I have 4 beautiful children and a wonderful husband,but every day I struggle with this disease.I didnt realise there was so many out there.I have recently been to try to get some surgery as now my children are off hand, i need to do this for me.some people say I am brave and confident but im not.My recent visit opened up a can of worms and the dr after 5 mins with me thinks I now need some sort of councelling,that by the way was never offered to me as an 18 year old girl.I am running the risk of losing my left eye as apparently the eye is dying.I wondered if any of you out there have experienced this.i look forward to hearing from anyone x
22) June 26, 2012 - 19:18
Name: Michele Location: Vancouver, BC, Canada E-mail: mdevlin@dccnet.com Comments: I first learned about Parry Romberg 5 years ago when a plastic surgeon did a biopsy on discoloured skin above my eye brow. Since, the disease has been slowly progressing and I now have an indent above my brow, a discolouration from my brow to my crown, and an atrophy of my cornea (probable PRS cause just diagnosed). I have been on a merry-go-round of medical tests and specialists here in Vancouver, only to be told recently that I have PRS. My response was, "yes, I know I have PRS and have known that for 5 years". Geesh. I think my next referral is to a specialist that has PRS cases here in Vancouver. Cross your fingers, I may finally get to the specialist I actually need. :)
21) June 23, 2012 - 01:33
Name: Same Location: Philippines E-mail: vj_Same18@yahoo.com Comments: Hi, with the symptoms and all manifestations I have read in the internet, I believe I have PRS. Though I once went to a Neuro to have my condition checked, he didn't find anything wrong, just a facial atrophy. I didn't went to any further medical check-ups as I feel the doctors have only very little knowledge about facial atrophy. Mine started when I was turning 18 and noticed a line forming in my chin making it look like I have a broken chin. As time passed, the right side of my face started to shink and also noticed that my eyelashes in the lower lid of my right eye actually went bald. I learned about PRS through Reader's Digest when I read about a girl who was diagnosed with PRS. From there I started searching the internet about the syndrome and I'm happy to find this site where I can share my condition to people who would understand more. I'm now 25 years old, I live a normal life and I still believe I'm beautiful though..hehe..MORE POWER to this site.
20) June 18, 2012 - 00:49
Name: Karen Location: Canberra Australia E-mail: kcinoz@gmail.com Comments: I have been diagnosed since November 2011. Not much info in Australia about adult onset PRS. Will be seeing a cranio facial specialist in Adelaide this week - maybe get some answers. Fingers crossed!
19) June 16, 2012 - 12:32
Name: Diego Location: Asuncion, Paraguay E-mail: mahata32@hotmail.com Comments: hi my name is diego, im 27 years old and im from Asuncion, Paraguay, south america, i have rombergs sindrome, i have all the symptoms since im 7 years and no doctor could tell me what it was till yesterday, a friend of my granpa mention something call corte de sable that described exactly what im feeling, strong headache, my eyeballs hurt, my skull its shaped wierd, i dont know who to ask help, please can someone send me an email with a specialist name to consult. thanks, im scare..i dont know what to do.
18) May 31, 2012 - 18:00
Name: Morgan Location: Monticello, Arkansas E-mail: Minimo1993@yahoo.com Comments: I'm happy to find this website. I was diagnosed with PRS about two years ago, having the symptoms since I was five. I'm now 19, and am happy to finally have the answer to what was happening. I've worked to spread the awareness of Parry Romberg Syndrome, even having a program at my high school. It's hard to believe how many people go through their lives without a diagnosis and, from experience, that is terrifying. I was lucky to find a Maxiofacial surgeon that had seen the disease once before, and she knew what it was as soon as she saw, though other tests were ran. This website is so helpful, and I thank everyone who contributed.
17) May 25, 2012 - 14:30
Name: Cheryl Location: USA E-mail: cheryltklein@gmail.com Comments: As a former member of this group I have stopped contributing to posts but I am still reading the digests. I want to thank so many of you for reading my blog "youarealreadybeautiful@blogspot.com" which is totally a personal acount of my life with PRS. This in no way is self-promotion and is not affiliated with the Romberg Connection, although I do go into length about Dr. Seibert who I mentioned while I was a active member of The Romberg onnection. I had my last surgery almost three years ago to relace lost mass on the right side of my face using my own fat. Dr. Seibert performed the surgery in NYC and also sadly it was the last time I saw him since he is no longer practicing in NY.
I am otherwise ,thank God, having no symptoms often associated with many cases of PRS. My two daughters 11, which is the age my PRS became viisible, and my other daughter is almost 15 are "healthy" pooh,pooh. It's a Jewish superstition to say certain things. Like Karma. I want to know this group has inspired me in ways I can"t even describe in words. Thank you and I pray they find a cure for PRS. Cheryl
16) May 15, 2012 - 09:58
Name: Greg Location: E-mail: Comments: Terry, Today is the 12 year anniversary of the day I got the phone call that you had left us. It is a feeling I can never explain. I love you and miss you with all my heart. Someday I will see you again. I have to beleive that...... I love you.....Ill always be your little brother.....Greg
15) April 30, 2012 - 17:45
Name: Greg Location: E-mail: Comments: Happy Birthday Terry. You are still missed more than you could ever imagine. I love you and look forward to seeing you again some day. Love, your little Brother...Greg
13) March 30, 2012 - 07:00
Name: Anne Location: southeast Michigan E-mail: swsider@gmail.com Comments: Newly diagnosed and happy to find this Web site. I'm looking forward to connecting with others.
Anne
12) March 30, 2012 - 00:10
Name: Kristine Location: United States, Kansas E-mail: Ksbuchholz@msn.com Comments: Just diagnosed this month with parry-romberg syndrome and I just wanted to say how impressed I am with the information I am finding on your website. More information than the doctor could even tell me. Hopefully if insurance cooperates I will have my first surgery next month. Thank you again for such an informative and supportive website.
11) March 28, 2012 - 07:16
Name: ricardo Location: campinas, sao paulo E-mail: g.starcopy@hotmail.com Comments: tenho esse problema desde 5 anos hoje tenho 36 sofro muito com isso fiz uma sirurgia na sobrapar, estou sem forças para continuar o tratamento, me ajudem
10) March 14, 2012 - 08:34
Name: Floortje Location: Netherlands E-mail: floormeijer2@hotmail.com Comments: Hello everyone! I'm Floortje from the Netherlands, i'm diagnosed prs myself and now i've to make an project work for my school and i'm doing it about parry romberg syndrome. Does anybody has good information about the causes because i can't find anything and if you want to tell your story, i'm very interested because i really want to know more about it. thanks in advance, Floortje
9) March 13, 2012 - 23:24
Name: Mary Location: San Jose, CA E-mail: heart4malawi@hotmail.com Comments: I found this site and I would like to help my sister. She was diagnosed when she was 5 (with a rare form of scleroderma is all I knew about it). The Romberg's description fits her exactly and I'm almost 100% sure that is the form she has after doing some research but she doesn't know that's what its called. She is 33 now and is suffering in so many ways, hiding from life. She has been through so much and she carries so much shame around this. If I could have one wish granted in my whole life, it would be to see her get the help she deserves. She doesn't know ANYONE else who has the same thing. I am 30, she is 33 and we are very close, yet we have only had maybe 3 very short conversations about her face and her pain around it. She keeps her feelings about it hidden from the world; she is too afraid to talk about it. She is living with an abusive man in Michigan who has her believing that no one will want her because of her face. We grew up in a small town in Iowa and she was made fun of by kids. That has hurt her so much. I'm hoping that one of you can help my sister in a way that I just can't because there's no way I can fully understand. She's not ready to search for this yet, but i'm hoping she will be and maybe I can help connect her to you. Can someone who is interested in helping my sister please e-mail me? Please, we have to help her out of this. She needs help! She's the most amazing person I know. I have NEVER heard her say a single negative thing about another person. She deserves the best life ever. Enough! I've seen her suffer enough! Its just gone on too long. She needs to know how beautiful she is and she needs to know she's not alone and she needs to have good friends. I know there's someone out there who can help her. Thank you so much in advance, Mary
8) March 5, 2012 - 13:16
Name: Linda Location: USA E-mail: Lmboscarino@aol.com Comments: I also have a daughter with PRS, and have been doing research on it. Was your child or yourself sickly as a young child? What age when diagnosed? When did she go into remission? Any other medical issues before or during her time with PRS active? Linda
7) February 22, 2012 - 17:23
Name: rachel Location: worcester england E-mail: relambert1@live.co.uk Comments: my son has been diagnosed with parry rombergs he is 11.
6) February 11, 2012 - 23:38
Name: Susana Location: Buenos Aires ARGENTINA E-mail: suvila180700@hotmail.com Comments: Quisiera saber si puedo comunicarme con otros pacientes en español. Esta enfermedad y sobre todo sus secuelas nos marcan en muchos aspectos y creo que el compartir la experiencia de convivir con esta situación puede ayudarnos mutuamente. Por mi parte, se me hace difícil hacer entender a mis seres queridos que esto es un síndrome, que no se sabe la causa y por lo tanto tampoco se sabe la cura. Ya he dejado de preguntarme por qué a mi. Ahora solo convivo con lo que tengo y espero lo mejor dentro de mis posibilidades. Espero que esto le sirva a alguien . Saludos
(I wonder if I can communicate with other patients in Spanish. This disease and its consequences we all make in many ways and I think that sharing the experience of living with this situation can help each other. For my part, I find it hard to talk to my loved ones that this is a syndrome, no one knows the cause and therefore no known cure. I've stopped wondering why me. Now I live with only what I have and hope for the best within my means. I hope this helps someone. regards)
5) February 3, 2012 - 19:30
Name: Tara Location: Staten Island, NY E-mail: tkiel1024@gmail.com Comments: This website is really informative. I'm still trying to figure out how to deal with this diagnosis and how it effects my family and myself. This seems to be the only place where I could find people who would understand what I'm going through. I'm lucky to have found this site.
4) January 12, 2012 - 16:20
Name: Kayley Location: England E-mail: kayleeyjay@hotmail.co.uk Comments: This websites very useful to me, but i didn't manage to find anything on pregnancy and the contreceptive pill? Also Is there anyway you can contact other people through here who have PRS? :)
3) January 9, 2012 - 23:05
Name: Leah Location: Silicon Valley, Ca E-mail: Leahmartinez130@yahoo.com Comments: This connection was very useful not only for myself but my family . I know little about PRS but was dx in 2005 with very little insight on what to expect ,if anything in the coming years. I recently have had an onset of headaches that are dominantly on the affected side. I am interested in learning more about this disease though I have had it since about age 15. The disease has not progressed as I can see visually but am concerned that it can at a later age. Any help on this would be much appreciated. My physician is not an expert in this area by any means.
Best, Leah
2) January 8, 2012 - 21:23
Name: Tiffany Location: Nashville, TN E-mail: tiffany.bierer@effem.com Comments: Diagnosed with Parry Romberg late in life (44 yr old) although I have had signs for years and nobody knew what was wrong
1) January 1, 2012 - 11:06
Name: Marilyn Location: Iowa USA E-mail: rombergs@hotmail.com Comments: Happy New Year Everyone! May you have a healthy happy year!
Name: Sheree
Location: Bailey, Colorado USA
E-mail: sewing4mysavior@gmail.com
Comments: I am 56 years old and have PRS. I had surgery when I was 15 years old and that was unsuccessful. I just have continued on with my life with the help from our Lord Jesus Christ. He is the factor that gets me thru all the strange looks from people and the names that kids called me. I certainly use alot of makeup (wish I had stock in the makeup companies).
As I viewed all the people in the pictures on this website one thing occured to me....everyone seems happy even with this deformity.
The Lord sees us differently, He looks in our hearts and He knows we are beautiful, He made us.
My last thoughts are....everyone...keep smiling!!