The Romberg's Connection 2009 Survey Results

Hair Affected

Page 35. III. Associated Symptoms (page 2 of 4) cont.: Hair affected
1. Please select how is the Hair affected:
Affected Responses
% of Number responding
(hair loss)
(missing all
or part of)
(missing all
or part of)
Loss of
body hair
Other (Specify) 8
Number responding = 55 / percent responding = 38% of total respondents (143).
Note: This was a multiple choice question.
This chart has a link to additional information.

Page 35. III. Associated Symptoms (page 2 of 4) cont.: Hair affected
2. Comments for Hair affected:
Not sure if it is related to hypothyroidism.
Hairless patch extending midway back on scalp, alongside of en coup de sabre.
I had parts of the head without hair but I had cut it all and after that made a treatment with carbonic snow and grew almost 70% back.
Hair loss is only along the line of the indentation.
My hair is thinner on affected side and a small area is completely white. No big problem.
It follows right up the line of the dent on my forehead.
She has had gray hair only on the left side. It has to be colored to hide it.
The hair in the temple area has receded and thinned. Some is just gone.
Hard to tell if high forehead is due to Romberg's or just a family father had a high forehead/temple line, but no Romberg's.
I had a small amount of hair loss at age 15 but then it stopped. About 2 years ago it started up again and now I have lost the majority of my hair on the right side, about 3 inches wide from my forehead to the back of my skull. It follows the coupe de sabre.
Afterwards I can say that since (or just before) it started, I had one spot on my head where the hair was completely white. Everybody laughed about it and said that I started young to become gray. However, I did not got more gray hair beside that one spot. Now I'm 45 I'm getting a bit more yes. :P
She has the main indention, then a smaller one about 1" away from the main one - both have hair loss (the main indention has the most hair loss).
gray hair in scalp, eyebrows and eyelashes
Hair grows unevenly.
Alopecia in the affected areas… they were totally bald but there is now some regrowth but the hair is very thin in thickness.
There is a bald spot on the right side of his head that was there when he was born and it has unusual skin in that spot also almost like a burn.
Right side of face - hair line is receding.
In the beginning there was a small area without hair - ca 1 cm2 now (within 20 years) this area has grown to ca 5 cm2.
Not having any hair on the en coup de sabre really was hard while being a teenager, and young adult... especially when swimming or when the wind would blow, etc!! Now, that the Dr. has fixed it, no worries, but the flat spot on the back of my head is bald, and always has been- the other day, my daughter commented on it while waiting for the bus... not that I worry about it now, but it is a hard part of this disease - especially for the young people!
hair loss at the left temple
part of lower eyelashes missing medially
The right side is thinning more than the left particularly around the temple area.
hair is gray
mild - small spot missing hair
hair loss - en coup de sabre?
We thought it was caused by eczema or allergies when she was younger. Hair loss was actually before 15, like 10, but the surgery was at 15.
Number responding = 25 / 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.