Parry-Romberg Syndrome Initial Symptoms Survey
Reported date: October 25, 2008
Survey conducted by Parry-Romberg Syndrome Resource, Inc.
What are the initial signs of Parry-Romberg Syndrome? In what physical way does this disease first present itself? Members of the online support group, Parry-Romberg Connection were asked to respond to the questions, “What were your initial signs of Parry-Romberg Syndrome? What physical indicator caused concern or alarm?”
49 People responded to the survey: 39 Female 10 Male
The results are listed according to frequency of responses. A total of 64 physical indicators were reported that appeared primarily on the face and scalp.
| Skin discoloration (brown, mottled, darkened) | 37% |
| Indentation (atrophy, dent) | 24% |
| White spot or streak on skin | 22% |
| Drooping eyelid | 8% |
| Hair color (streaks/patches white or gray) | 8% |
| Vision problems | 8% |
| Rash | 4% |
| Facial asymmetry | 4% |
| Loss of patches of hair | 4% |
| Dental problems | 2% |
| Lack of eyelashes | 2% |
| Crooked smile | 2% |
| One ear smaller | 2% |
| Facial palsy | 2% |
| Acne | 2% |
| Facial pain | 2% |
It is important to clarify that this survey was conducted in an attempt to investigate initial onset symptoms of Parry-Romberg Syndrome. This is not a clinical or scientific survey to be used for diagnosis. Our organization, Parry-Romberg Syndrome Resource, Inc. is proactive in its search for information regarding early diagnosis of this disease. We strongly encourage people who have encountered the symptoms listed in the survey to seek medical consultation and to take an active role with a medical professional by continued monitoring of changes of these symptoms.
Parry-Romberg Syndrome symptoms are listed on the National Organization of Rare Disease link below.
http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Parry%20Romberg%20Syndrome