30 12/22/07 GMT
| Comments: I'm 42 years old and I've just started to have the vision problems. Is there any doctor out there that can cure this? |
29 11/30/2007 GMT
| Comments: I HAVE NOT BEEN ACTIVE IN THE LAST FEW YEARS. MY E-MAIL WAS CHANGED AND I HAVE NOT BEEN IN TOUCH. I'M FROM THE OLD SCHOOL AND HOPEFULLY SOME OF YOU WILL REMEMBER ME. PLEASE REINSTATE MY MEMBERSHIP AS I WOULD LIKE TO BE BROUGHT UP TO DATE. LOOK FORWARD TO TALKING WITH YOU SOON. THANKS, HAL |
28 11-24-2007 GMT
| Comments: Kelly I think you are my Christmas angel I am crying as I read this tonight I have a niece and she is in her 30's with 2 sons and a beautiful daughter who I am thinking has been mis diaganosed for many years now. She started exactly like you and so far she has been dx with coupe desaber scleraderma and has had like 6 surgery's on her beautiful face and had numerious ones on her scalp to replace the hair and stretch the skin. She has a steel plate in her head and all through this she is going through nursing school. She has finished her LPN and almost through her RN. She copy's from me I did the same with nursing then I got sick. She just had a stroke a few weeks ago now they say she is seizuring all the time. We thought we were going to lose her soon. Then like a gift from GOD and an angel I found your article tonight her DR.s just told her this is what she may have a different specialist of course and I have a glimmer of hope is in my heart if the other surgeon hasn't done too much damage. She see's another specialist from Mayo clinic next Friday TY so much my Christmas angel Merry Christmas and good health and Love to you and your family Reba |
27 11/15/2007 GMT
| Comments: Hello!
I just got diagnosed today @ Mayo, after years of wondering. It's a relief to make sense of the diverse symptoms [no one paid attention to my face!] I was born with PR, but at 43 just began to have eye problems on the atrophic side. I'll let you know what the doctors here tell me...
Cheers, Jack |
26 11/05/2007 GMT
| Comments: I to suffer from this disease, but I've known of it most of my adulthood as hemifacial atrophy. I just found out the name of it through a cosmetic doctor, but he said he couldn't help me personally because he doesn't do the type of surgery that I need done. He told me to search the web to find someone to help me and that is were I found your web site and it is helping me tremendously. I really hope to hear from you all soon. Parry-Rombergs disease did not start deforming my cheek until I was 23 years old and I am now 44 soon to be 45. My problem is I can't find anyone around my area that will help me surgically, and now the disease is affecting my right cheek also and the doctor told me that that is rare in itself that it attacking both cheeks. So as you can see that I am desperate to find someone to help me. Financially, I don't have it and emotionally, I am losing it. Please help me if you can. Hoping to hear from you soon, Sincerely, Donna
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25 10/20/2007 GMT
24 10/19/2007 GMT
| Comments: Your all beautiful !!! |
23 10/13/2007 GMT
Comments: Hello. It is nice to find a website like this.
I am 17 years old and I've just found out my father has the Romberg syndrome. It is weird, because ell of my life I was used to see my daddy with a funny face and when I asked why he had it he told me it just became like that. I didn't ask again 'till now. And my dad's case is serious, his face was all messed up. He now has a lot of surgeries in his face, but it makes me so sad to think what he had to go through when he was a little boy, because the disease developed when he was 10. People are so cruel and my dad has always been such a nice person. I'm going to medical school and so I understand the syndrome and I see everything that is attached to it, not only the cosmetic part but so many health issues! And though he didn't have an easy way in life, my dad is a fighter. He is even a successful CEO of a company despite of his appearance. He managed to marry a beautiful woman even before any surgery was performed on him. It is aweful when strange people keep asking what's wrong with my dad's face. I rather not explain, so I just say he was on a car accident. But I remeber this time I lost it. I was buying an ice cream with him, and I stayed behind to pay, he went to sit at the table. Then, the cashier woman asked me the same question. I saw her face with a gossip expression on it, like thirsty of an aweful story to tell her friends.. So I just told her "what do you care, you old bitch?" It was also hard to explain my classmates. People are cruel, specially in Colombia, but they never dared to make any comment about my dad. I guess now I'm fine with my father's condition. I used to be very troubled about it before. I was even embarrased once that a certain persona would meet him and then make fun of my. But now I understand my dad, just thinking what he had to go through makes me feel closer to him.
I just wanted to share my experience.
Laura - Medellín, Colombia. :)
PD: anyone welcome to write back if you'd like. |
22 09/24/2007 GMT
| Comments: Diagnosed with PRS at 30. Onset of symptoms 3 1/2 years old. |
21 09/23/2007 GMT
| Comments: I just discovered this site and the fact i have Romberg's. I just wanted to say thank you for the site :) |
20 09-16-2007 GMT
| Comments: I just wanted everyone to know who has contributed to this site is really amazing! One day about 7 years ago I was browsing the web and just happened upon this site. I cried for hours reading stories and feeling your pain.I was diagnosed with Romberg's when I was 6, and have had surgery to correct the problem as best as possible. I'm very happy with myself but sometimes I really take a hard look at my self and wonder if it will ever start progressing again. I pray to the Lord almighty that it doesn't and so far He has graced me with my "beautiful" face. It is a breath of fresh air to read about all you guys and to know that you stay positive and realize that you are not alone. God is kind and loving, He takes care of His children, it may not seem like to some, but He does in His way! Thank You so much for this site, i't truly a blessing. |
19 09/11/2007 GMT
| Comments: I am living in London, England. My sister is living in Germany (Hagen) and she has got Parry Romberg Syndrome. She found out this problem 2 years ago but her doctor told her PRS was not active. She had an operation on her face. During these two years she had some health problems. She lost so much weight, some problem on her right ear, epilepsy, concentration problems, pain her arms and legs ( she can't walk without support) and etc. She is staying one of a hospital in Hagen at the moment.
I wonder about if there is anyone have PRS in Germany, where do you get treatments and what kind of health problems you have. If you can give me any advice like recommend a doctor, hospital, Please send me an e- mail.
My e- mail. I want to get more information about PRS. I am scare to lose my sister.I want to help her and I need some advice how can i do that. Thaks for all of you |
18 09-07-2007 GMT
17 08-21-2007 GMT
| Comments: I'm trying to get answers for my daughter Ashley who has prs, she is 9 years old and we are looking into a plastic surgeon. She has it on her forehead and on top of her head both on the left side. |
16 08-17-2007 GMT
| Comments: Hi, my name is Maria. I am 32 years old and I was told that I have Romberg's syndrome at age 21. I allready had surgery twice, but nothing has work. Sometimes I lose hope on getting better, having Romberg's has been very difficult for me specially now that I have lost a lot of my hair because of this. I hope that some day they find a cure for all of us, until then I will continue looking for the right surgery that will work for me. |
15 07/29/07 GMT
Comments: I have this condition, but it has been called Parrie Romberg and now Parry Romberg. Parry Romberg has all the information of what I have. Have you ever been told the wrong name? I would like to join the support group and talk with everyone. I am 53 yrs and have had this since I was 16 yrs. Have had a few surgeries. One major surgery & 3 outpatient surgeries in New Orleans LA. Have had One major in Alabama will be having another surgery in Alabama in September of this year 2007. I have been married 36 yrs and have two sons & four grandchildren and work for the State of LA. It has been very interesting to see the different stages of each persons condition. I have always wished that I could help support someone with the same condition that we have so they don't feel like they are all by themselves. I'm sure you know what I mean with each of you starting this support group. My Husband has been my support all of these years and I would like to help someone else. Please email me back when you get a chance and I will be waiting to talk to you. God Bless each and everyone one of ya'll.
Sheryl |
14 July 23, 2007 GMT
| Comments: My sister has this Romberg's Syndrom since her 7 years age. Her nose, chin and forehead was deformed. Also she has bald hair in her right side. Her total right side was effected. We tried with different doctor in Bangladesh. But nothing could help. I would like to know how can I solve this problem. I thought plastic surgery can help a little. But not sure. Anyone please help me with the information regarding the doctor or hospital I should contact. |
13 July 21, 2007 GMT
| Name: |
E-mail: |
| Location: new york |
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| Comments: still missing you Terry....after all these years. |
12 15 july 2007 GMT
| Comments: hello sir.. u have very nice collection.of it.as im tooo having same disease......so i want to know more about it n any tretment of it......the recent 1.im also doctor compleetd my MBBS [ BACHELOR OF MEDICINE N BACHELOR OF SURGERY ].i wil b thank ful to u if i can get the information on my mail thank u sir dr arun |
11 10-07-2007 GMT
| Comments: I think this is the home for me! |
10 May 8, 2007 GMT
9 April 7, 2007 GMT
Comments: I just discovered the Romberg's Connection site. I've never heard of anyone else who has this condition, so I was thrilled to see that others have come together. I've had Romberg's Syndrome since I was 3 years old. I would like to talk to others and share experiences. When I've gone to doctors for problems I have with this condition, none seem to know what to do with me, or have ever even heard of this condition.
It is all very frustrating.
Thanks,
Kristina |
8 04/29/2007 GMT
| Name: Greg |
E-mail: |
| Location: Idaho |
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Comments: Dear Terry,
I just wanted to wish you a happy Birthday Your whole family misses you. This day never gets any easier. A lot has happened since we last updated you. Jim, Caroline and I have all published Novels. If you were still around I know you would add your name to the list. We love you and miss hearing from you and hearing your great laugh.
All my love on your Birthday.
Your little brother, Greg |
7 04/28/2007 GMT
Comments: Happy Birthday Terry!
oxoxo |
6 04/27/2007 GMT
Comments: Herzlich willkommen bei der Romberg's connection. Was Theresa, Marily und Terry vor einigen Jahren aufbauten, soll seine Erweiterung finden in Deutscher Sprache. So wird denn Terry's Vermaechtnis erfuellt:
Kommt hervor aus der Einsamkeit. Wir sind fuer Euch da, wenn Ihr jemanden braucht, ueber Eure Erkrankung zu reden. Es gibt noch viel zu tun und gerne will ich meinen Beitrag dazu leisten.
Markus |
5 04/18/2007 GMT
| Comments: thank you for your guestbook. my daughter was just diagnosed tuesday with romberg's and i don't even know where to begin. i would appreciate any e-mails and information. i have researched alot. she is quite advanced, and will be going for reconstructive surgery in the next year. it took us 2 years to get a diagnosis. i'm not sure if our doctor is the right one, considering he has never dealt with this before. i am also aware of how rare it is. thank you again for your website, it helps to be able to reach out. |
4 02/20/07 GMT
| Comments: I am searching this site for my son Andreas who lives in Kansas and has never searched for anyone with Rombergs. I know he would still be interested though and would appreciate a guest book. |
3 02/02/07 GMT
| Comments: Hello
I have Rombergs and have been dealing with this for about 25 years of my life. It's a struggle everyday but I'm grateful I'm still alive. It's just hard to get through life with it. Even though it is a rare syndrome when I look on this website I see alot of people are diagnosed with it. I'm glad to find there is a support group for this and we are all pretty much going through the same experiences. Thank you to the Rombergs Connection group. |
2 1/29/07 GMT
| Name: Dr Robert Melamede |
E-mail: rmelamed@uccs.edu |
| Location: Colorado Springs Colorado |
|
| Comments: I am researching the biochemistry of cannabinoids with respect to their possible therapeutic value for patients with Romberg's. It occurred to me that anti-diabetic drugs that act on PPAR receptors, which cannabinoids also do, might have beneficial affects. This class of receptors is very much involved in lipid metabolism. I would like to know if any Romberg's patients are diabetic and if their anti-diabetic drugs have any affect on their Romberg's symptoms. |
1 01/03/2007 GMT
| Comments: I hope 2007 will be a good year for all of us! |
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