The Romberg's Connection 2009 Survey Results


Page 52. III. Associated Symptoms (page 4 of 4) cont.: Stress
1. Please select how stress affects the person with Rombergs:
Affected Responses
% of Number responding
Daily life struggles19
Difficulty in relationships14
Difficulty with job opportunities10
Panic attacks12
Self esteem issues29
Other (Specify) 5
Number responding = 35 / percent responding = 24% of total respondents (143).
Note: This was a multiple choice question.
This chart has a link to additional information.

Page 52. III. Associated Symptoms (page 4 of 4) cont.: Stress
2. Do you feel stress has a negative impact on Rombergs?
Affected Responses
% of Number responding
Number responding = 33 / percent responding = 23% of total respondents (143).

Page 52. III. Associated Symptoms (page 4 of 4) cont.: Stress
3. Comments for Stress:
I notice when I am stressed, I get more headaches, migraines, and eye problems.
I feel stress can bring on anything.
I lose my temper quickly sometimes it scares me I am afraid I will do something I will regret later.... my face it just burns in that moment and I have a smarting pain sometimes it changes it's color and it's red and my veins..... like they will blowup.
I wonder if my stress has escalated the process of Rombergs (the atrophy). I am a full- time student, work full-time, and juggle life in general.... so I wonder if that caused the progression so quickly.
I think the frustration of there not being adequate medical knowledge and treatment is a major factor in Romberg related stress. The lack of knowledge and interest by doctors is astonishing and frustrating. I go into a panic when I have to see a doctor about my PRS symptoms because I am so often told I am not experiencing what I say. This even though the doctors have never even heard of PRS, so how could they know? The only doctor I have ever seen who knew anything about PRS was the plastic surgeon who diagnosed me. Some of the worst are neurologists. Some of the best are physician assistants they at least are not dismissive and seem to want to help and find out more.
I get stressed whenever I notice my Rombergs is progressing. Other than that, life pretty much goes on and I don't think about it. Also, I was under a lot of pressure at work last year which seemed to speed up the progression.
Seems to 'burn' when life gets tough!
I don't get stressed from Rombergs but have the normal stresses of everyday life... my Rombergs had been quiet for nearly six months and then some major family drama involving a major car accident and my husband and myself separating it is now active in a big way with my face tingling and itching constantly... though it is reducing as things get sorted.
Stress has a HUGE affect in this case.
I'm scared for me and my children. I was never so anxious before as I am every day now. In fact, I didn't know what anxiety really was until this came into our lives. How do you not despair about what is or might be happening to you or your child when you see the changes?
I feel that it really gets my PRS going, but then again, it really affects my Lupus too!
My daughter needs to find a niche with as little stress as possible. She is taking medication for depression at this time as well, to my chagrin.
When she becomes over tired or stressed she gets infections in her face. She is on antibiotics on a daily basis to prevent these severe and painful outbreaks.
Number responding = 14 / percent responding = 10% 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.