Parry-Romberg
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What is Parry-Romberg?
Is there any treatment?
What is the prognosis?
What research is being done?
Organizations
What is Parry-Romberg?
Parry-Romberg syndrome is a rare disorder characterized by slowly progressive deterioration (atrophy) of the skin and soft
tissues of half of the face (hemifacial atrophy), usually the left side. It is more common in females than in males. Initial
facial changes usually involve the tissues above the upper jaw (maxilla) or between the nose and the upper corner of the lip
(nasolabial fold) and subsequently progress to the angle of the mouth, areas around the eye, the brow, the ear, and the neck.
The deterioration may also affect the tongue, the soft and fleshy part of the roof of the mouth, and the gums. The eye and
cheek of the affected side may become sunken and facial hair may turn white and fall out (alopecia). In addition, the skin
overlying affected areas may become darkly pigmented (hyperpigmentation) with, in some cases, areas of hyperpigmentation and
patches of unpigmented skin (vitiligo). Parry-Romberg syndrome is also accompanied by neurological abnormalities including
seizures and episodes of severe facial pain (trigeminal neuralgia). The onset of the disease usually begins between the ages
of 5 and 15 years. The progression of the atrophy often lasts from 2 to 10 years, and then the process seems to enter a stable
phase. Muscles in the face may atrophy and there may be bone loss in the facial bones. Problems with the retina and optic
nerve may occur when the disease surrounds the eye.
Is there any treatment?
What is the prognosis?
What research is being done?
Select this link to view a list of studies currently seeking patients.
Trigeminal Neuralgia Association 925 Northwest 56th Terrace Suite C Gainesville, FL 32605 info@fpa-support.org http://www.endthepain.org Tel: 352-331-7009 800-923-3608 Fax: 352-331-7078 |
Epilepsy Foundation 8301 Professional Place Landover, MD 20785-7223 postmaster@efa.org http://www.epilepsyfoundation.org Tel: 301-459-3700 800-EFA-1000 (332-1000) Fax: 301-577-2684 |
March of Dimes Foundation 1275 Mamaroneck Avenue White Plains, NY 10605 askus@marchofdimes.com http://www.marchofdimes.com Tel: 914-428-7100 888-MODIMES (663-4637) Fax: 914-428-8203 |
National Organization for Rare Disorders (NORD) P.O. Box 1968 (55 Kenosia Avenue) Danbury, CT 06813-1968 orphan@rarediseases.org http://www.rarediseases.org Tel: 203-744-0100 Voice Mail 800-999-NORD (6673) Fax: 203-798-2291 |
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Last updated February 14, 2007