The 2010 Romberg's Connection Guestbook

26) November 25 2010 at 19:59:00 GMT
Name: Kelly
Location: Australia
E-mail: kellyjos@live.com
Comments: Hi my name is Kelly,
After reading about Rombergs, i find i have so many of the symptoms, can i get your opinion should i be worried or am i being paranoid??

Since my teenage years i have noticed one side of my face is larger/crooked, my nose is really crooked and seems to be getting worse the older i get, its getting that bad i want it surgically fixed. Recently i found out i have Scoliosis, my spines bent? I have recently been getting pain and sometimes really sharp stabbing pain in the the front of my head, around the same area i also have pigmentation that has only appeared in the last few years on the left side of my forehead above my eye. Also I have just recently gone to the doctors about the left side of my jaw locking/spasms, that are extremely painful. My jaw has always been crooked.
Also my father passed away 3 years ago from Scleroderma.

25)
Name: becky
Location:
E-mail: becky@bluewelly.com
Comments: hello everyone, been a while! well I am having an op scheduled for dec for fat injections into my cheek. I am totally petrified about recovery...as Dr told me it will take a week to settle down after. Can anyone tell me if they have had similar op and will i wake up with a huge cheek? and how long the swelling will last for?

Reassurance please!!!!!!
I am happy I am getting the op done as I believe this is the way to go after new fill injections did not give me the result i wanted.

Thank yo

from Becky

24) October 13 2010 at 23:10:05 GMT
Name: Sara
Location: St. Joseph, MO
E-mail: showe.10@hotmail.com
Comments:

23) September 27 2010 at 17:23:45 GMT
Name: Manny
Location: Australia
E-mail: mannyyoung@live.com.au
Comments: My 12 year old son was diagnosed with romberg's disease when he was 4. My son starts high school next year and my worries of teasing and bullying from others, nearly breaks me. I fervently hope that my beautiful son has the strength to cope, hold his head high and thrive and not be beaten down by other who stare and or ridicule. I love my son so much, and it breaks my heart when I see him shy away every now and again. My tears are flowing freely and I must go.

22) September 01 2010 at 21:36:04 GMT
Name: Teresa
Location: Katy, Texas
E-mail: cuevast@sbcglobal.net
Comments: Hello everyone. I have PRS since I was 21 years old. I have had fatty graft surgeries twice to deal with this disease. I am now 60 years old and need to have two of the fatty grafts replaced. I would like to know if anyone around my age has done something different to deal with this disease? I really don't want to go through another lengthy surgery. Please email me. Thank you!

21) August 23 2010 at 12:41:26 GMT
Name: aarti
Location: india
E-mail: sunshine_dawn2005@yahoo.com
Comments: Hello Sir,

I am Aarti, from India having Rombergs disease, whereby the scar and indentation has been spread from middle of head, forehead covering nose and bit porion of cheek under left eye. I am seeing it with me since the age of 5 years and it only 2 days before that i researched for it on internet. Reading about disease and experiences of others has surely given me a more positive hope, strength and confidence to face the world with it. Its great to have a contact with you people.

Regards
Aarti

20) July 14 2010 at 10:41:34 GMT
Name: Patti
Location: pewaukee wi
E-mail: patti.christel@gmail.com
Comments: my name is Patti. when I was 12 yrs old a blue line went down my forehead...then my forehead became indented....like a groove. my mom took me to md's but no one knew what it was...then she took me to a plastic surgeon who said it was scleraderma. he did plastic surgery and filled in the groove with silicon. I have a fine scar line down my forehead. yesterday I went to see a plastic surgeon to inquire about breast reduction. we got to talking about my forehead. he told me I did not have scleraderma, that I have prs. i got online and found out for the first time in my life why my face is the way it is....i never knew. i have never had any physical problems associated with this. i just have always hated the way i looked. I am so glad to know finally after 40 some years just exactly what I have. I have not had any changes in my prs since it showed up in adolescent. can i expect it to come back?

19) June 25 2010 at 02:36:01 GMT
Name: celia
Location: france
E-mail: c.valino@laposte.net
Comments: pour moi romberg a commencee des que j'ai vue le jour pourquoi??????? ne comprend toujours pas cette maladie me ronge je n'en peut plus je me sens seul parfois, grace a elle je me fait operee tout les 6 mois a 1 ans elle est tres virulante et bien sur evolitive elle ma touchee de partout au cerveau " kist de 16 cm qui a grosi le visage cote gauche main droite jambe droite des tumeurs

un jour alors que j'avais 16 ans il a fallut m operee d'urgence une tumeur etait apparu a la machoir gauche il a fallut me l'enlevee prendre des cotes flottante en me faire des implants on avait jamais fait sa avant et ce n'etait pas sur que cela marche mais SI je dois etre a moi 65 operations depuis. et tout sa et vrai
j'ai cree un blog: romberg.kazeo.com venez nombreux m voir et dite moi ce que vous en penser

merci a tous d'etre la je ne suis plus seul
courrage a tous pense a vous tous

18) June 18 2010 at 03:24:25 GMT
Name: celia
Location: france
E-mail: c.valino@laposte.net
Comments: moi meme fait partie de parry romberg

17) May 21 2010 at 14:51:44 GMT
Name: Megan
Location: Colorado Springs
E-mail: meganwilder@live.com
Comments: Hello all, I'm not sure if anyone reads this or not...I would have been so much better off in life had I found this website 15 years ago, when I was diagnosed with PRS. It was devastating growing up with it, especially being a girl who wanted to date. My parents did all they could but they were advised to wait to have any surgeries until my face had stopped growing. I never had any surgery and now I am 22, I have been in the US Navy for 4 years and am married with a beautiful daughter. I have been offered to get the reconstructive surgery (and since I am active duty military, I wouldn't even have to pay), but now, it has become a part of me. Yes, sometimes I look at myself and want it to be gone. But I have accepted it and it has made me a stronger person...God bless.

16) May 12 2010 at 09:14:14 GMT
Name: JARLE
Location: 7690 MOSVIK NORGE (Norway)
E-mail: jarle.ringstad@mosvik.net
Comments:

15) April 28 2010 at 15:27:48 GMT
Name:
Location:
E-mail:
Comments: Happy Birthday Terry!!!

14) April 28 2010 at 00:27:44 GMT
Name: Beth
Location: Nashville, TN
E-mail: elizabeth.mcallister@pop.belmont.edu
Comments: Hey everyone!!! I've been a member for several months and I just created a website for anyone ages 10-18 - it's a big brother/big sister website for kids/teens with PRS. Please check it out and refer it to anyone with PRS who is eligible to sign up! Brothers and Sisters Through PRS

13) March 21 2010 at 13:39:02 GMT
Name: Greg
Location:
E-mail:
Comments: Dear Terry, I dont really have a way to reach you. So, I hope wherever you are that you get to look in on this page from time to time. Its been 10 years now, and when something good or bad happens you are still the first person I want to call. I know this much, your cell phone is out of reach. :) So, for the past 5 years I have worked at a job that I have enjoyed, but was not overly challenged by. I received an offer from a company that is extremely challenging in every aspect. There are financial rewards that come along with the challenges, but its the challenges and the chance for growth that intrigue me the most. I know from past experience that there are no Guarantees in life on how long I get to be here in life. So I decided if I am ever going to test myself that now is my chance. I wish I could tell you all about it. I wish we could sit down over coffee and talk about it. I will settle for this. Just know that the choice makes me happy. :) I love you buddy and I will see you when I get the chance. :) All my love.. Your little brother.. Greg

12) March 19 2010 at 11:27:25 GMT
Name: MARIO
Location: CROATIA
E-mail: marplesa@inet.hr
Comments: Hello! My sister have a Romberg since she was 16 years old. She done a facial reconstraction, she had a lots of surgerys, but she have a spazams in her left side face all the time. Sometime she get a Botox in a face muscle, and it works for a few months and than she have spazams again. Can someone tell me his/her story about this, and is there any chance for cure? Thank You.

11) February 06 2010 at 15:19:07 GMT
Name: Rachel
Location: MB, Canada
E-mail: sunkissed_ray@hotmail.com
Comments:

10) January 04 2010 at 20:46:36 GMT
Name: Paul
Location: Lima, Perú
E-mail: paulrg@live.com
Comments: Tengo 18 años, y me diagnosticaron PRS a los 13 años, hay que ser muy fuerte para vivir con algo que nadie puede explicar. Este año pienso hacerme una cirugía plástica para poder estar mas tranquilo. Gracias a todos los que comparten sus historias y espero que a todos les valla muy bien en todo. saludos desde Perú.

9) January 01 2010 at 14:15:04 GMT
Name: Tammy
Location: Missouri
E-mail: longsintheburg@embarqmail.com
Comments: Our son at the age of 15 has just been diagnosed with Romberg's disease and I am doing research on the cause thank you for the information provided on this web site.