The 2009 Romberg's Connection Guestbook

34) November 16 2009 at 07:29:50 GMT
Name: Markus
Location: Germany
E-mail:
Comments: As many years the Romberg's connection exists, as many years Marilyn is engaged to keep the the group together. Whenever an e-mail arrives with the words "Our newest member..." I'm glad that the group has such a busy but decent, unboastful / retiring moderator. (Oh God, I hope I took the right translation,the dictionary presented!) She succeeded in involvement her husband Gerri to undertake the technical part, to create the website and keep it running all over the years. Nobody knows where the group would stand today without Marilyn. Without Marilyn, such an active exchange of experience and knowledge would hardly be possible. Let's say thank you to " la Grande dame", the Great Lady of our connection - just today, on her birthday.
Thank you,
Marilyn,
and happy birthday.
You may be proud on your work and I'm proud to may know you.
Markus

33) November 16 2009 at 07:26:13 GMT
Name: Markus
Location: Germany
E-mail:
Comments: Die Romberg Connection besteht nun schon viele Jahre und von Anfang an arbeitet Marilyn engagiert daran, die Vereinigung zusammenzuhalten. Immer wenn eine Email eintrifft mit den Worten "Unser neuestes Mitglied..." bin ich froh darüber, dass diese Gemeinschaft von solch einer fleißigen und bescheidenen Moderatorin geführt wird. Es gelang ihr, von Anfang an auch ihren Ehemann Gerri in die Arbeit einzubeziehen, der den technischen Part, den Aufbau und die Pflege der Website, übernahm. Wer weiß, wo die Romberg Connection heute ohne Marilyn stünde?! Ohne sie wäre solch reger Austausch von Wissen und Erfahrungen innerhalb der Connection nicht möglich. Lasst uns deshalb "danke!" sagen an eine großartige Frau, an die "Grande Dame" der Connection - gerade heute, an ihrem Geburtstag.
Danke,
Marilyn,
und herzlichen Glückwunsch!
Du darfst solz sein auf dein Werk und ich bin stolz, dich kennen zu dürfen.
Markus

32) November 11 2009 at 20:32:04 GMT
Name: Sarah
Location: Tucson, AZ
E-mail: sarah.lundberg@comcast.net
Comments: My 5 year old son was diagnosed with PRS today.

31) October 03 2009 at 04:30:06 GMT
Name: Markus
Location: Emden / Germany
E-mail:
Comments: Happy birthday, dear Gerri!
Keep on being as you are: powerful, snappy, dynamic, ... - and thank you very very much for all that you've done for the Romberg's Connection.

30) October 01 2009 at 23:37:44 GMT
Name: Jennifer
Location: Ashland, OR USA
E-mail: newworld287@gmail.com
Comments: My little sister is the most influential and inspirational person in my life because of the strength she demonstrates despite her struggle with this syndrome. This is wonderful that a place exists where she, my parents and others like us can share and know we are not alone.

29) September 18 2009 at 22:49:51 GMT
Name: Beth
Location: Nashville, TN
E-mail: elizabeth.mcallister@pop.belmont.edu
Comments: Hello! My name is Beth and I'm an 18 year old college student originally from Maine. I was diagnosed with PRS when I was in the fourth grade, but I honestly don't really remember too much of life without it. I've had it ever since I was around five years old. Since then, my amazing parents (always supportive and loving) have made my options clear to me, and more than once I have refused surgery. My case is not as bad as some others', though it's still rather noticeable. I've chosen not to get surgery because I feel I've grown stronger by having this disease. I'm not saying I'm grateful for this - no one would be, but I am saying that I'm trying to...look at it in a positive light, I suppose. I've had people stare, make fun of me, and make rude remarks to me about how I look, and it cuts me at the time, but I grow stronger from it in the end because really, they're the ones who feel bad about themselves, and they don't even deserve to get to know you if they're going to act like that. I'm sorry this is so lengthy, but what it gets down to is that I hope I can help kids the way others helped me when I was first figuring out and discovering my disease. I'm always willing to talk if anyone ever feels the need to contact me!

28) September 02 2009 at 19:25:09 GMT
Name: Marilyn
Location: Iowa
E-mail: rombergs@hotmail.com
Comments: Pat H. at 25 Washington St #508, please contact us again.

27) August 25 2009 at 11:02:04 GMT
Name: KIAN HU ONG
Location: MALAYSIA
E-mail: ong@hexagonchoice.com
Comments: HI, Just curious to know if there is any data being collected about the longest age of the person who affected by PRS. I am 38 now.

26) August 19 2009 at 00:29:21 GMT
Name: Jason
Location: Los Angeles,CA
E-mail: Bluddymess@aol.com
Comments: I was diagnosed with RS when I was a young man.

25) August 17 2009 at 20:01:40 GMT
Name: Andrea
Location: Ohio
E-mail: ablake83@gmail.com
Comments: Hello, my name is Andrea. I am 25 years old and was diagnosed with PRS when I was 4 or 5 years old. I have had 2 cosmetic reconstructive surgeries (age 8 and 20) and still look the same. I do not plan to have any further surgeries because I am finally proud of what I look like and could not imagine seeing any other face in the mirror or pictures. I hope this finds you all doing well and feeling confident in yourselves. Feel free to email any time. Love always,
Andrea

24) August 10 2009 at 11:18:15 GMT
Name: Pam
Location: Aurora, CO
E-mail: poolng47777@msn.com
Comments:

23) August 08 2009 at 15:17:17 GMT
Name: Brandee
Location: Ellensburg, WA
E-mail: flaming_hounds_OF_Doom@hotmail.com
Comments: i would like to say i have been diagnosed for about 2 yrs and am on methotrexate it sucks hopefully i get better.. there are worse cases out there so god bless all and hope to get better cause i know all of u will and if u get surgery it will make you look even better!!

22) July 23 2009 at 08:50:43 GMT
Name: Pat
Location: 25 Washington St #508
E-mail: pat@sixq.biz
Comments: I want to join your email list.

21) June 30 2009 at 19:00:38 GMT
Name: Tammie
Location: Vermont, USA
E-mail: tammiestammers1@yahoo.com
Comments: Hello everyone....quick question- just saw my neurologist who has been seeing me after having had a seizure last fall, so have been working only part time, etc, and also saw my rheumatologist for my Lupus- the rheumatologist has decided to try me on Cytoxan or Methotrexate due to me having lesions on my brain which they figure have caused the seizure- anyone out there have any experience w/ these?? The literature she gave me w/ them looks pretty scary, so I'm pretty leery of either of them, and would appreciate some advice from you guys! Thanks!
Tammie- 39 PRS since mid teens

20) June 14 2009 at 19:15:03 GMT
Name: Cathy
Location: Mill Creek, WA
E-mail: capvannuys@gmail.com
Comments: This is my new email address.

19) May 28 2009 at 03:07:34 GMT
Name: Tyler
Location: New Hampshire
E-mail: tylerbullard@yahoo.com
Comments: hi, my names is Tyler, I'm 17 and The doctors just diagnosed me with Parry Rombergs Syndrome. Well Technically they are still taking some "Tests" and what not to make sure that's what it really is, but they are pretty sure it's either that or Linear Schleroderma, not much of a difference if you ask me. I'm not having really that hard of a time with it, mostly because it's not that bad at this point and I know that surgery's can hide it. I'm just scared to be honest. I've only had it for about a year now so I don't know how much worse it can get, I just don't really know how to cope with this really..... I'm glad I can talk to people though that can relate. If anybody can give me advice, or even comfort, it would be appreciated.

18) May 15 2009 at 09:33:52 GMT
Name:
Location:
E-mail:
Comments: FOREVER IN MY HEART TERRY

17) May 11 2009 at 20:41:58 GMT
Name: Isabelle
Location:
E-mail: isa5127@hotmail.com
Comments: Hello, I'm Isabelle. I'm pleased to read all your messages. I have Romberg and I think that only people with the same horrible disease can understand how we can feel alone.

16) May 02 2009 at 20:50:53 GMT
Name: JP
Location: New Mexico
E-mail: reister1977@aol.com
Comments: I have Romberg's my case was pretty bad bone loss whole 9 yards it happened when I was about 4. I am 32 now.

15) April 28 2009 at 08:56:28 GMT
Name:
Location:
E-mail:
Comments: HAPPY BIRTHDAY TERRY! OXOXO

14) April 20 2009 at 02:06:03 GMT
Name: Alana
Location: Brisbane, Australia
E-mail: alanaluppi@lanskey.com.au
Comments: Hello, my name is Alana, I am 28 yo and I was diagnosed with Romberg's Disease when I was 13. Since then the hemifacial atrophy has worsened (but has only affected my left cheek), and have never found a doctor who will perform surgery to fix it. I have so many questions and would love to talk to people affected with the same thing! I look forward to hearing any info you have and talking with you soon. Thank you for starting Romberg's Connection!!!! Alana

13) March 27 2009 at 21:36:27 GMT
Name: Rosie
Location: Greater Los Angeles
E-mail: rosiema25@yahoo.com
Comments: My mom has been suffering from Perry-Romberg Syndrome for about thirty years. She has had reconstructive surgery done to her 5-6 different times. In the first operation tissue was removed from the gluteus maximus and in the second operation tissue was removed from the abdomen. Her body rejected the tissue from both operations and the end result was worst then before the operation. After those two operations my mom went to Mexico and had reconstructive surgery. I am not sure what material the plastic surgeon used for the procedure, but the material came from Germany. This operation was successful and lasted for about 15 years, before it began to disfigure. After the 15 years, my mom returned to the same doctor and he performed another operation and this time he used silicone. The second operation took place about 5 years ago and was not as successful as the first. My mom has been feeling a lot of discomfort in her face and pain and is desparately seeking information regarding specialists that are familiar with PRS and can help her. The problem that we have is that doctors she has seen in the US (Los Angeles area) are not familiar, do not know how to treat, do not know how to examine, or are familiar with the resources available to people who are suffering from this illness, or do not know what doctor they can refer her to that can help her. My mom has insurance and is looking for a doctor that can help her. Please advise if there are any specialist/doctors that you know that are familiar with prs or any information that can help my mom. We have all the records from Mexico, from the last operation. Hope to hear from you.
Sincerely,
Rosie

12) March 16 2009 at 16:46:26 GMT
Name: Kizzy
Location: Indiana
E-mail: brown348@yahoo.com
Comments: Hi everyone! Sorry I haven't been able to go through all of the e-mails I was sent because it was my mom's e-mail address. I have now set-up my own account so you may e-mail me at the address listed now. Thank all and I look forward to corresponding.

11) March 16 2009 at 01:11:35 GMT
Name: Megan
Location: Kentucky
E-mail: megryan618@hotmail.com
Comments: Needing Some Help!!! My husband was diagnosed with Parry Romberg Syndrome back in 2000. A doctor in Ohio, who had 2 other patients with PRS, has seen him since he was diagnosed. This doctor recently moved to North Carolina and we are looking to find a doctor who has PRS experience but a little closer. Any help would be appreciated. Thanks :)

10) March 13 2009 at 15:29:37 GMT
Name: kizzy
Location: Indiana
E-mail: pta196443@yahoo.com
Comments: I have be diagnosed with romberg and still find it difficult to believe and even live with at times.I was diagnosed in my late 20's and have watched as my face as slowly wasted away and is still continuing to do so. I am in severe pain and as I seek doctors for pain medication I find that I am looked upon with complete ignorance and have no way of explaining what I feel from day to day. I am very sensitive to light and just trying to make it through a difficult time in my life now that I am 32 years old and still suffering. I do thank you all for posting your stories and giving me hope to know there are people out there just as myself who do care. Who are taking the resources that they have and are trying to learn more to support and find help for those like myself who don't have those resources. Thank you!!! (The e-mail address is my mother's who is my biggest and greatest support. She has helped me through it all.)

9) February 24 2009 at 21:08:29 GMT
Name: Terry
Location: Oklahoma
E-mail: terrylb63@dishmail.net
Comments: My daughter was just this past year diagnosed with en coup de sabre / Linear Scleroderma, with one doctor stating he also thought Romberg Syndrome. She is currently being seen by a doctor with UT Southwestern and a doctor in Tulsa. If you would like to view the blog I started it is at www.kealyona.blogspot.com - let me know if you also think Parry-Romberg is involved. Thanks and Hugs to you all.

8) February 20 2009 at 01:07:55 GMT
Name: Joanie
Location: maryland
E-mail: mustangs8811@yahoo.com
Comments: My daughter {Nichole} was diagnosed PRS this year. She has had all the symptoms for years. I guess I don't now where to start. I'm scared for her and myself. I don't know what to expect from this disease. She is so much more stronger than I am. If there's anyone out there who would like to talk email me.

7) February 13 2009 at 18:13:11 GMT
Name: Deb
Location: Colorado
E-mail: rhodus_clan@msn.com
Comments: I was diagnosed with PRS last week at age 39. We believe mild physical changes may have started to occur around 35. The Doctor's that I have seen have never treated this disease. They say I am unusual because of my age. I'd like to know if there is anyone else out there that started with symptoms later on in life, like myself. I would also like to know if anyone has tried "Eastern Medicine" in treatment and what the results were. What I have read so far on medical research is not very encouraging. I am very freaked out and frustrated. Although what atrophy I currently have is nothing like what I have seen on the internet and I am scared. I welcome any and all comments.

6) February 09 2009 at 00:19:30 GMT
Name: nichole
Location: Maryland
E-mail: avonrepnicholeb@yahoo.com
Comments: Hi, my name is nichole. I have had pr symptoms since I was 8, I never knew what was wrong with my face until this year at the age of 18 I was diagnosed with PRS. I guess you can feel how upset i was but I became more motivated when I found this support group from that point to now I have been researching my little heart out on the phone with people all over the world I've been from library to library and now have chosen to write a series of books with all my research. thanks alot group for helping me when I needed it the most !!!

5) January 28 2009 at 00:44:02 GMT
Name: Kathy
Location: Churchville, Maryland
E-mail: kathyluczak71@yahoo.com
Comments: You can not know how excited I was to come across this website. Reading your pages, I am overcome with emotion. To actually relate to someone out there that knows what I am feeling.. you can not know what this means to me...Thanks to all.....

4) January 23 2009 at 08:59:08 GMT
Name: Camille
Location: France ( Perpignan )
E-mail: camillaries@hotmail.fr
Comments: J'ai une atrophie faciale du profil droit qui c'est développé progressivement depuis mon adolescence. A 25 ans j'ai consulté un chirurgien qui m'a diagnostiqué le syndrome de Parry-romberg. Il m'a comblé la joue atrophiée avec ma graisse (cuisse). Depuis plus rien, mais j'ai ma bouche toujours abîmée (apparement on ne peut rien faire), et je viens de découvrir sur ce site que d'autres personnes sont atteinte du même syndrome que moi... j'aimerais en savoir plus sur cette maladie, sur la suite car on ne m'a rien expliqué. Merci

3) January 17 2009 at 04:08:55 GMT
Name: Gail
Location: BC, Canada
E-mail: trevgail@telus.net
Comments: Very happy to be apart of this support system. My nine year old daughter was given the diagnosis 3 months ago.

2) January 09 2009 at 16:48:20 GMT
Name: Raul Lopez Serna
Location: Mexico, DF
E-mail: raullopezserna@hotmail.com
Comments: I am a physician currently working and doing research on Neurologic complications of Parry-Romberg Syndrome. Any patient suffering of this disease feel free to contact me. I´ll send you a survey whose results will help to understand better the disease. Dr Raul Lopez Serna
Instituto Nacional de Neurologia y Neurocirugia, MEXICO