The Romberg's Connection 2009 Survey Results

Skin Is Discolored

Page 51. III. Associated Symptoms (page 4 of 4) cont.: Skin is discolored
1. Please select the location of discoloration on the head:
Affected Responses
(172)
% of Number responding
Cheek41
54%
Chin26
34%
Ear4
5%
Eye lid14
18%
Forehead24
32%
Lower lip11
14%
Upper lip18
24%
Nose9
12%
Scalp10
13%
Temple15
20%
Number responding = 76 / percent responding = 53% of total respondents (143).
Note: This was a multiple choice question.




Page 51. III. Associated Symptoms (page 4 of 4) cont.: Skin is discolored
2. Other locations of the body with discoloration:
Other locations Responses
(54)
% of Number responding
Arm4
12%
Back12
35%
Chest6
18%
Leg8
24%
Neck14
41%
Side2
6%
Stomach3
9%
Other (Specify) 5
15%
Number responding = 34 / percent responding = 24% of total respondents (143).
Note: This was a multiple choice question.
This chart has a link to additional information.




Page 51. III. Associated Symptoms (page 4 of 4) cont.: Skin is discolored
3. Please rate the severity of this discoloration:
Rating Responses
(77)
% of Number responding
1 (very mild)10
13%
2 (mild)23
30%
3 (moderate)31
40%
4 (severe)11
14%
5 (very severe)2
3%
Number responding = 77 / percent responding = 54% of total respondents (143).




Page 51. III. Associated Symptoms (page 4 of 4) cont.: Skin is discolored
4. Comments for Discoloration:
Responses
(24)
Vitiligo was first known sign of PRS. Vitiligo then turned a full 360 degrees into dark pigmentation.
Discoloration very noticable in early years - on lower chin - white patch began. Lip noticably bluish tinges. Then area on cheek became pale in color. All much improved since reconstructive surgeries.
I guess not enough blood goes through those areas.
The area that has lost tissue has become discolored... mostly around the right side of my neck.
Medium brown colour, shiny.
Has changed colors... started of pink, then red, then blue/white and then tan. Now a darker brown/gray color.
Dark areas can look bruised at times, very thin skin so blood vessels can be seen.
No discoloration on head.
It's like the blood is missing from that area.
Easily covered with bare minerals makeup.
Mostly red blemishes on forhead on left side and on check but can cover up with make up.
Bluish tint where there is a lack of tissue.
It's worst on my forehead and neck.
The eye discoloration is under the eye (looks like a black eye) not on eyelid.
Only because where there is little muscle/fat the skin is more translucent - can see the blue veins underneath.
Cheek gets really red if outside in the cold!! On the plus side - NO ZITS on affected side!!! Woo hoo!!
I would say severe... dark brown in color. Doctors would probably say moderate.
I think the skin on my right side is getting thinner as the veins are showing through on that side and it is much more lined of course. Under my eye is noticeably darker now and I have to use cover-up under my make-up.
Looks like suffering from mild vitiligo.
"Chin" above is underneath her chin. It seems to vary with available light and with the day for some reason.
There are areas of her face that have no pigment.
The discoloration only started a few years ago (I am 29 now, diagnosed when 8). Just when you think you've had it all and the disease has come to a stop.....
Discoloration on upper right and lower right side.
This came very late, in my second round of symptoms in my late 40's.
Number responding = 24 / percent responding = 17% 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.