The Romberg's Connection 2009 Survey Results

Comments on Symptoms Were Reactivated

Page 14. II. Rombergs Symptoms History cont.: Symptoms Reactivated
1. Please comment on why you think that the symptoms were reactivated:
I don't know .....I had a period around16 when it stopped for like 6-8 months, the skin was not colored, the pain stopped but after that it started to ache and then followed it's course.
See explanation of #13.
I got into a car accident when I was 17 years old. I sustained a laceration above my right (affected) eye. The forehead atrophy and subsequent eye involvement seems to have started after that.
As noted previously, I'm not completely certain that I've had a reactivation, but if it was a PRS reactivation that caused the fat grafts in my chin to begin atrophying, then it would likely have begun during pregnancies with my oldest two children.
At the age of 4, a dark mark occured on my cheek, during my 30's the dent started in my cheek and forhead.
The fat injections were absorbed on left cheek and lip.
I think my symptoms got reactivated due to pregnancy issues and hormones.
I had no sign of PRS on the right side of my face until I had went through a stressful time with my daughter, because she has systemic lupus arethamatosis with nephritis, then about the year of 2007, I noticed the right side of my face starting to have like a dent about the size of a dime. I had hoped that it wasn't that, but it was.
Teenage stress over appearance and comments from others.
Stress in adulthood, general development throughout the lifespan that we all encounter...this just has its own set of issues...
No idea maybe stress plays a part in it.
Can see changes in the face and eye.
"Childbirth for certain. Then was doing quite well until a car accident in which the blunt trauma led to seizure activity. Seizures continued for 3 years until ultimately they took her life."
Again it is my foot that seemed to stabilize and then started to get worse again recently.
I wish I knew why. The symptoms seemed to be dormant for the last 20 years and in the last 18 months I've notived my left eye seems to be sinking more into the head.
No idea. I did get pregnant twice over 10 years ago but cannot say Rombergs was re-triggered by that. I do not put it down to aging as my normal cheek has not indented & there is not much wrong with my right eye sight.
I definitely think that lately it's been because of stress! I also feel that having been pregnant in the past (I have 2 children) has caused this disease to be active, but I also have Systemic Lupus Erythematosus.... so, having two rare and odd diseases, its hard to tell!
"- irritating tingling - the tissue seemed tighter"
After each pregnancy and again, more recently, with menopause.
Because I lost a lot of weight and when that happens I seen a dramatic change in my face.
Not sure
Possibly related to pregnancy or stress.
I'm not sure, maybe hormonal changes. (I am now what is know as middle age) ;-)
Don't know
"The coup de sabre came on when I was pregnant with my second child when I was 26. It didn't go away after the birth. About 6 months after the birth, I had eye surgery (for a squint) and started to notice the difference between the left and right sides of my face. I didn't ask anyone about it at that time because everyone says that no one's face is completely symmetrical! When I was 29, I lost almost 10 kilos in over about 6 months. That's when the dramatic difference in my face became noticeable enough for me to ask my doctor about it. My left cheek was hollow and the cleft in my chin became more obvious. I also asked about the coup de sabre at that time (it hadn't gone away since the pregnancy)."
Age 23, neuroneuritis and vision loss in left eye. Syptoms stopped at age 12 and then this occurred.
I have no idea. Everything seemed to have stopped for a few years, and due to so many operations you could hardly see I have Rombergs anymore, until a few years ago.
Had surgery in May of 89 and November of 89...lost most of the grafts that were put in due to body rejections but noticed that in 90 my face had started to atropy again.
I don't know if they were reactivated. I cannot comment.
Unsure on this.
Going off of the birth control pill, therefore being subject to the natural monthly hormone fluctuations, then having four children and all the hormone swings that brings.
I honestly have no idea as to what caused this to act up again. It has been more than 26 years since it has stirred up again.
"1. Life situations involving extreme, long-term stress.
2. Pregnancy"
I'm wondering if it was the stress brought on when my child began to be tested for pigment changes. At first they thought he had an endocrine issue, but now it appears we are in the same boat. Stress has been daily and relentless. Am working on managing it daily.
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Symptoms reactivated with each pregnancy then deactivated.
Stess, anxiety, depression.
Pregnancy reactivated or at least exacerbated the symptoms. Not sure what could have spurred things on in the last 5 to 8 years. Possibly stress.
The symptoms that I have had seem to be a progression, not a reactivation.
Number responding = 45 / percent responding = 31% of total respondents (143).

Disclaimer: Please be advised that everyone's experiences may be different and appropriate treatments may vary. Any medical information that you find on The Romberg's Connection website must NOT serve as a substitute for a consultation with one's personal physician. Our visitors should discuss any specific questions or concerns they may have about Rombergs with health care professionals who are familiar with the specifics of their special case.
As a support group, The Romberg's Connection is unable to offer medical advice to anyone.

Throughout this survey, when we use the term "Rombergs" or "Romberg" we are referring to: "Parry Romberg", "Parry Rombergs", "Parry Romberg Syndrome" and "PRS".

This is an unscientific survey designed to gather information from those who must deal with Rombergs on a daily basis.