9) November 12, 2013 - 15:16
Name: Becky Location: Uk E-mail: Becky@bluewelly.com Comments: Hi Marilyn and everyone out there!
I just wanted to drop a note to update on progress for treatment for parry-rombergs. Well fat transfer op via lipofilling 1st one in 2011 appeared to give some coverage....3 more since. Results appear better each time with giving some symmetry back to my face! The last op was last Friday and this one slightly different as consultant took fat from top of my leg this time. He explained that latest research shows the fat from the leg appears to have a better result with less being reabsorbed! Not quite sure what will happen next. I have said to my consultant that I would like to start a family, so if he felt I needed more treatment I might suggest a break!
I always wish and hope this will be it with results being permanent! My consultant is wonderful and is very much a perfectionist as well! He has given me hope that there is always some treatment top up, I am very scared if or when he says this is it! Although I am very much a project for him as well as him helping me. He reports he wants to present me as a case study to help further treatment for patients using fat transfer.
I do plan to ask for a copy of my photos of treatment stages to put on the Rombergs connection site as I think some people will appreciate even small improvements for us are a massive confidence boost! Fingers crossed xxx hope everyone is well xxx
Thanks for letting me off load!
8) November 7, 2013 - 13:38
Name: zainab Location: iraq E-mail: firstname.lastname@example.org Comments: Hi every one Im suffering from parry rombergs syndrom since 1999 when I was in 7 years old the left side of my face begin shrinking gradually I want your advice about the ways of treatment because our doctors ability are limited in Iraq thanks
7) September 8, 2013 - 05:33
Name: cindy Location: Dublin Irelamd E-mail: Comments: Im 53 years old been living with rombergs all my life and have just been told this week what iv been living with
4) April 15, 2013 - 15:31
Name: Jerri Location: California E-mail: email@example.com Comments: Hi, I just recently self diagnose myself with parry Romberg syndrome. My left side face have been slowly shrinking for the last 7 yrs.. I would like more info from anyone that has treatment or surgery. Before and after photo. Thanks!
Name: Sheryl Location: Amite, LA 70422 E-mail: firstname.lastname@example.org Comments: March 15, 2013 - 14:40
2) February 1, 2013 - 23:35
Name: Linda Location: AZ USA E-mail: email@example.com Comments: Qouls love to add our daughters picture to your album.. She is 14 diagnosed at 9
1) January 1, 2013 - 12:11
Name: Marilyn Location: Iowa, USA E-mail: firstname.lastname@example.org Comments: May you all have a Happy, Healthy New Year!!