Facial Neuralgia
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Related Disorders



The names Progressive Facial Hemiatrophy,  Progressive Hemifacial Atrophy, Romberg Syndrome, PRS, HFA are synonyms  for this disorder


READ ABOUT KELLEY, an extraordinary little girl who suffers from Parry-Romberg Syndrome, in an article published in the Rocky Mountain News. Don't miss reading the MANY MESSAGES sent to her from people all over the world.

The following information is excerpted  from the National Organization for Rare Disorders, Inc.database on rare disorders  and is posted in compliance with the FAIR USE DOCTRINE and is for educational purposes only and not for commercial use.

Parry-Romberg Syndrome is a rare disorder characterized by slowly progressive wasting (atrophy) of the soft  tissues of half of the face (Hemifacial atrophy.) It was described in the last century by Parry (1825) and Henoch and Romberg (1846).

The resulting wasting can sometimes result in  distinctive changes of  the eyes and hair; and neurological abnormalities including episodes of  uncontrolled electrical disturbances in the brain (seizures) and  episodes of severe pain in tissues supplied by the fifth cranial nerve  (trigeminal nerve) including the mouth, cheek, nose.  Trigeminal neuralgia is sometimes one of its complications.

Symptoms and physical findings  associated with Parry-Romberg Syndrome usually become apparent during  the first or early during the second decade of life. In rare cases, the  disorder is apparent at birth. The majority of individuals with  Parry-Romberg Syndrome experience symptoms before the age of 20 years. 

In individuals with the disorder, 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 progress to involve the  angle of the mouth, the areas around the eye, the brow, the ear, and/or  the neck. In most cases, progressive tissue wasting is limited to one  half of the face, usually the left side. Affected areas may demonstrate shrinkage and atrophy of tissues beneath the skin (subcutaneous tissue),  the layer of fat under the skin (subcutaneous fat), and underlying  cartilage, muscle, and bone.

In addition, the skin overlying affected  areas may become darkly pigmented (hyperpigmentation), with in some  cases certain areas of white (depigmented) patches (vitiligo). Many  individuals also experience atrophy of half of the upper lip and tongue  as well as abnormal exposure, delayed eruption, or wasting of the roots  of certain teeth on the affected side. In most affected individuals, hemifacial atrophy typically progresses over approximately three to five  years and then ceases. In many cases, hair abnormalities may also appear  on the affected side, including whitening (blanching) of the hair as  well as abnormal bald patches on the scalp and loss of eyelashes and the  middle (median) portion of the eyebrows (alopecia).

Individuals with Parry-Romberg Syndrome may experience associated  neurological abnormalities. These can include severe headaches that last  for extended periods of time and may be accompanied by visual  abnormalities, nausea, and vomiting (migraines); facial pain (trigeminal  neuralgia); and/or periods of uncontrolled electrical disturbances in  the brain (seizures) that usually are characterized by rapid spasms of a  muscle group that spread to adjacent muscles (contralateral Jacksonian  epilepsy).

 In most cases, Parry-Romberg Syndrome appears to occur  randomly for unknown reasons (sporadically). 

Online Resources
Email: rombergs@hotmail.com
Website: http://www.geocities.com/HotSprings/1018/



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