28) November 18, 2011 - 15:07
Name: Steffi Location: Germany E-mail: firstname.lastname@example.org Comments: Hallo, ich bin aktuell 43 Jahre alt und habe seit meinem 10./12. Lebensjahr in meiner linken Gesichtshälfte eine Hemiatrophia faciei und wurde viele Male operiert. Leider war ich für viele Ärzte nur ein interessantes Versuchsobjekt - kaum eine der Operationen hat ein positives Ergebnis gebracht, eher den Zustand aufgrund von Narbenbildung etc. verschlechtert. Erst im letzten Jahr erfuhr ich per Zufall vom PRS. Es ist genau mein Leidensverlauf. Erst Flecken im Kiefer- und Halsbereich, dann die Athrophie des Fettgewebes im Bereich Wange, Stirn links. Die linke Oberlippe ist nach innen verzogen, das linke Auto liegt tiefer, die Kieferknochen links sind nur noch sehr dünn. Ich plane keine weiteren Oerationen mehr, meine Hoffnung eine wirkliche Verbesserung des jetzigen Zustandes ist zu gering. Wer interessiert ist, dem schreibe ich gerne ausführlicher. Auf jeden Fall hilft es mir, nun auf Eurer Seite die vielen Mails von anderen Betroffenen zu lesen, zu erfahren, wie sie mit dieser Bürde umgehen und sie in ihren Leben integrieren. Leider habe ich das noch immer nicht für mich geschafft. An manchen Tagen mag ich am liebsten nicht in den Spiegel gucken... Ich würde mich über Post sehr freuen. Auch in Englisch. Viele liebe Grüsse an alle!
(Hello, I am currently 43 years old and have since my 10/12. Age in my left side of the face and one hemifacial atrophy was operated many times. Unfortunately, I was for many doctors only an interesting test subject - hardly any of the operations produced a positive result, the more deteriorated condition due to scarring, etc.. Only last year I learned by chance from the PRS. It is precisely the course of my suffering. Only spots in the jaw and neck, then the atrophy of adipose tissue in cheek, forehead on the left. The left upper lip is twisted inward, left the car sits lower, the jaw bones are left only very thin. I was not planning any further Operation more, my hope for real improvement of the present state is too low. Anyone who is interested, I write you more. In any case, it helps me, now on your side to read the many messages of other persons concerned to know how to deal with this burden and integrate them into their lives. Unfortunately I have still not made for me. Some days I do not like to look in the mirror ... I would appreciate very post. Also in English. Many greetings to all!)
27) November 16, 2011 - 00:34
Name: Sabrina Location: Tennessee E-mail: email@example.com Comments: I am a proud member of this support group. Anyone here who has spoke to me knows I will do everything I can to befriend fellow PRS Connection members. If you want you can add my email to your contacts and feel free to email me anytime about anything.
You are never alone!!!
26) November 7, 2011 - 13:58
Name: Angela Location: Omaha NE E-mail: firstname.lastname@example.org Comments: I was diagnosed after 22 years with Parry Romberg Syndrome. I am about to have reconstructive surgery on December 15th 2011 and am interested in sharing experiences with others.
25) October 30, 2011 - 16:54
Name: Becky Location: Uk E-mail: Becky@bluewelly.com Comments: Well cannot believe I am back to work tomorrow after having the op 2 weeks ago!!! Everything appears to be ok and swelling has gone down so fingers crossed now!!!
24) October 26, 2011 - 02:42
Name: Nancy Location: Ipswich Queensland Australia E-mail: email@example.com Comments: I have parry romberg on my right side of my head, and looking for a doctor that knows about the parry romberg
23) October 14, 2011 - 12:47
Name: Becky Location: Uk E-mail: Becky@bluewelly.com Comments: Well that's it I've had the op!! Very swollen and tired! But fingers crossed for further results! Any tips for a positive recovery?? Thanks marilyn for your email xxxxx
22) October 3, 2011 - 13:59
Name: Markus Location: Germany E-mail: firstname.lastname@example.org Comments: Happy birthday, Gerri! Without you the group would not have grown as big as it is. Thank you so much and keep being as you are.
21) September 30, 2011 - 00:42
Name: Jason Location: Los Angeles, CA E-mail: email@example.com Comments: Hi, I'm wondering if anyone has successfully applied for SSI due to PRS related issues in California... Thanks for any responses J
20) September 22, 2011 - 09:48
Name: Leslie Location: Newcastle South Africa E-mail: firstname.lastname@example.org Comments: Interesting just a pity such a little new research gets done on prs. For interest - still only 2 reported cases in South Africa?
19) August 24, 2011 - 15:34
Name: mariana Location: argentina E-mail: email@example.com Comments: Hola! mi nombre es Mariana y soy mamá de Lucas quien recientemente fue diagnosticado con sme de Romberg. Actualmente toma metotrexate y ácio fólico, fue evaluado po dermaóloga neurólogo, reumatólogo, odontólogo y otorrino. también está realizando kinesiología facial. quería saber lo útimo en tratamiento y abordaje de este síndrome La verdad que es un gusto haber encontrado este sitio para compartir los diferentes momentos de este proceso... ademá de conocer a todos los integrantes de este grupo, me gustaria saber si hay alguien de la Argentina. Cariños. Mariana
(Hello! my name is Mariana and I am a mother of Lucas who was recently diagnosed with sme of Romberg. Currently take methotrexate and Acio folic was evaluated po dermaóloga neurologist, rheumatologist, a dentist and audiologist. is also conducting kinesiology facial. latter one wanted to know what treatment and management of this syndrome The truth is a pleasure to have found this site to share different points during this process ... Besides meeting all the members of this group, I would like to know if anyone in Argentina. Affections. Mariana)
18) August 22, 2011 - 12:24
Name: Becky Location: Uk E-mail: Becky@bluewelly.com Comments: Hello everyone!!!
My operation for fat filler injections has been booked for 14th of October, relieved and anxious about it all. Does any one have any pictures that they wish to share after/before pictures of results of having this operation?. I would really appreciate any advice or tips for speedy recovery. My husband is worried about that I will be affected from not instant results?! I have been told I will be bruised and swollen, but will take a couple of weeks to settle down. I know this is the right decision for me, but would appreciate any information regarding similar operations.
Thank you Becky 32. Uk prs 6 years diagnosed ago x
17) August 3, 2011 - 16:53
Name: Negassa Location: Ethiopia E-mail: firstname.lastname@example.org Comments: As I am one of the people with Parry Romberg's Syndrom, I am so happy to join this web site. I hope I will contribute to and benefit from its membership.
16) July 13, 2011 - 20:46
Name: Tracey Location: Brisbane Australia E-mail: email@example.com Comments: Hi would like to make contact with people with parry rombergs in Australia was in touch with a girl in melb but lost her email. Does anybody else have this affecting a limb as well as the face
15) July 12, 2011 - 09:03
Name: Debbie Location: Kenya E-mail: firstname.lastname@example.org Comments: This is so encouraging, my mum has had romberg for more than 20 years and she is my pillar of strength. It is not a common condition in our country and it has been hard for her to bare the stares, murmurs and comments, but she walks with her head up high and am so proud of her. From the photo album she has been affected like Jessica from Mississippi - USA.
I pray to God that one day she will be able to access the proper treatment, fat injections, for her to be back to her beautiful self once again.
12) June 08, 2011 at 20:53
Name: Heather Location: West Virginia E-mail: email@example.com Comments: Well, This journey has been rough! Being a mother of 14 week old twin boys and becoming new to PRS during pregnancy has been a challenge--- But reading everyones story has helped me to realize my life is not over and I can make it through this! All of you are so brave-- I can only pray I will have the support and faith that many of you have! I have been experiencing severe fatigue and eye problems! If anyone can help or has similar problems please feel free to email me at (see above) Thanks so much and God Bless All with Love
11) June 02, 2011 - 20:36
Name: Becky Location: Grayslake, IL E-mail: firstname.lastname@example.org Comments: It is such a comfort to be able to visit a site like this and know that I am not alone. Thank you all for sharing your stories and pictures! Thank you all for your courage, and strength that flows out of your words and images through the computer screen. We haven't even met, but you all fill me with hope and an inner confidence that is very peaceful to me. I look forward to meeting some of you someday!
10) June 02, 2011 - 07:26
Name: janice Location: philippines E-mail: email@example.com Comments: hi there! wow! i wish to be a part of this team. you are so amazing in starting this group. i wish i had known about this before. i believe i have rombergs, though i am not officially diagnosed. haven't been back to a doctor since i was six, im now 25. it keeps me inspired to be a better person knowing that there are people like me who struggled but never lost hope and continued to share love and kindness despite having this condition. i hope i could be a member of this group and learn more about parry rombergs. thanku so much!
9) May 29, 2011 - 12:53
Name: DeeDee Location: Denver, Colorado E-mail: firstname.lastname@example.org Comments: My Daughter has PRS. It was officially diagnosed in Oct 2010 but we noticed changes in her smile about a year prior to that. So far, she has been treated with oral steroids and UVA1 photo-therapy. I would love to hear from anyone who also has this and has had UVA treatment. Thanks.
8) May 17, 2011 - 09:03
Name: C Location: New Orleans, LA E-mail: email@example.com Comments: Recently I self diagnosed PRD from "Mystery diagnosis" tv show. Prior to this, the Dr's had put me through a series of tests etc..and said that I had a fat atrophy on the left side of my face but, no diagnosis and no treatment suggestions. Symptoms started in mid 30's after oral surgery to remove impacted wisdom teeth.
7) April 30, 2011 - 16:05
Name: . Location: E-mail: Comments: Terry, tried to wish you a happy birthday the other day but there is a problem with the guest book.
6) April 28, 2011 - 17:13
Name: Greg Location: Idaho E-mail: Comments: Dear Terry, I wanted to wish you a happy birthday. I wanted you to know that there is not a day that you arent walking around with me somewhere. You are in my heart and I think about you all the time. I love you and miss you. I hope god knows what a special soul he has up there with him. I love you...... Your little brother...Greg
5) April 14, 2011 - 13:30
Name: Valerie Location: Colorado USA E-mail: Valerie4401@aol.com Comments: I am still going through tests to determine if it is parry romberg syndrome and no hidden intruder in my body. When I found out I thought I was ready to give up. Its upsetting! Reading your stories is keeping me strong during the testing process so I thank you. I am just waiting for one last mri before my diagnosis is complete. I look forward to interacting with all of you after this step. Much love and God Bless. ~Valerie
4) April 12, 2011 - 20:50
Name: Sabrina Location: Detroit, Michigan E-mail: firstname.lastname@example.org Comments: Hi My Name is Sabrina. I am 48 Years old. I have Parry Romberg syndrome. I did not know what it was until I met a Doctor removing a splinter from my nail bed in 2005. I always wondered what was wrong with the right side of my face. It started wasting away at age 10. My mom thought I was suffering from a stroke or had encountered a electrical shock. I was always teased or made fun of. I Have 11 brothers and sisters and am I the only one with this rare disorder. I would love to become a member of Parry Rombergs foundation and I am interested in telling my story of the symptoms I remember having during the onset of noticeing my face waste away and submit some pictures. I can be contacted at email@example.com. Thanks Sabrina
3) March 05, 2011 - 19:55
Name: christina Location: california E-mail: firstname.lastname@example.org Comments:
2) January 26, 2011 - 14:31
Name: Kelly-Rae Location: Lethbridge, AB, Canada E-mail: email@example.com Comments: I have parry rombergs and would like to talk with people who also have this and find more information.
1) December 31, 2010 - 23:59
Name: Marilyn Location: Iowa, USA E-mail: firstname.lastname@example.org Comments: Happy New Year Everyone! May we continue to give support and share our experiences.