14) December 31, 2014 - 06:29
Name: Maggie Location: Missouri E-mail: Cmngar@sbcglobal.net Comments: New dx of PRS for myself, currently researching treatment options and emotionally trying to cope
13) December 14, 2014 - 07:43
Name: LG Location: Austria E-mail: klausklughofer@gmx.at Comments: Hallo mein Name ist LG bin 32 Jahre alt und komme aus Österreich. Habe diese Erkrankung seit meinen 13. Lebensjahr. Ich würde mich sehr gerne mit betroffene über diese sehr seltene Erkrankung austauschen. Verbleibe daher in der Hoffnung, dass sich bald nette Menschen bei mir melden.
LG
12) December 10, 2014 - 21:17
Name: Marilyn Location: Iowa E-mail: rombergs@hotmail.com Comments: To the lady I met in Younkers today, please contact me if you would like more information.
11) November 13, 2014 - 14:34
Name: Lena Location: Deutschland E-mail: alr91@gmx.de Comments: Hallo ich bin 23 undbin selbst betroffen. Wo und wie kann ich denn Kontakt aufnehmen? LG
10) November 12, 2014 - 02:58
Name: tuuli Location: estonia E-mail: tuuli05@gmail.com Comments: Hello. My daughter has PRS since she was 4 years old. Now she is already 11 years old. I wish that someone would recommend a specialist or clinic in Europe. I would be very grateful :)
9) July 25, 2014 - 22:12
Name: Margy Location: WV E-mail: john_margy@yahoo.com Comments: Just stop by to say Hi and introduce you to my daughter Hannah https://www.facebook.com/hannahbattlingprs I did fill out the questionnaire a few months back, love to you ALL!!!!
8) July 7, 2014 - 06:33
Name: Michele Location: Phoenix, AZ E-mail: michelewebb2013@gmail.com Comments:
7) May 26, 2014 - 12:49
Name: Laurianna Location: Dallas, TX, USA E-mail: Comments: Marilyn et al.
When at a museum in Dallas, I took a quick snapshot of an interesting picture from a presidential campaign for Polk and Dallas. Polk was the 11th President of the United States. The reason I took a snapshot was because Dallas' face was drawn full and Polk's was drawn with the left side of his face almost obviously atrophied. I came home and looked him upon on Wiki, and there was the 1844 campaign banner image: http://commons.wikimedia.org/wiki/File:Polk_Dallas_campaign_banner.jpg This is a drawing, however, why would Dallas' face be full and Polk's not be?
So, I thought I'd poke around a little more, and behold: at the US Library of Congress are more drawings of Polk. http://www.loc.gov/pictures/search/?q=james%20polk
I remember a few years ago that those of us on the Romberg's Connection were looking for a famous person who had PRS. Is it a possibility I found one? Is this worthy of further research?
Laurianna
6) May 25, 2014 - 14:55
Name: Amy Location: Milford, New Jersey E-mail: amyjo0218@gmail.com Comments: I was diagnosed at 5-6 years of age. I have had multiple surgeries since 8th grade, the last surgery at 18. i am 39 years old and my Rombergs has started to atrophy again in the last few years. Going to see my surgeon again. Would love to hear from others who have had successful procedure.
5) May 15, 2014 - 20:44
Name: Greg Location: E-mail: Comments: I wanted to start off by saying god bless all of you. I know what you are enduring is difficult. I'm so glad for this site to help you all learn new information. Thank you all for sharing. :)
Its been 14 years since one of the co founders of the site and my big brother, Terry Burau passed away from a heart attack. I just wanted everyone to know he is never more than a beat away from my heart. He was an amazing person. I wish you all could have known him the way I did. I also wish time actually healed the feeling of him being gone. but it doesn't. God bless all of you..
Love you Terry.......
4) May 11, 2014 - 15:47
Name: Jennifer Location: Southern California E-mail: Dpmtngirl@aol.com Comments: I am a 35 year old married mother of two with PRS. I was recently diagnosed with the disease but I have been dealing with it for 10 years. I am interested in connecting with others who are also dealing with PRS.
3) May 5, 2014 - 13:35
Name: Christina Location: Banning, California E-mail: ochoa25@msn.com Comments:
1) January 1, 2014 - 10:40
Name: Marilyn Location: Iowa E-mail: rombergs@hotmail.com Comments: Happy New Year to all our Romberg's Connection family. May it be a healthy and happy one!
Name: Maggie
Location: Missouri
E-mail: Cmngar@sbcglobal.net
Comments: New dx of PRS for myself, currently researching treatment options and emotionally trying to cope