Parry-Romberg Syndrome (cont.)
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At what age does Parry-Romberg syndrome occur?
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 for Parry-Romberg syndrome?
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There is no cure and there are no treatments that can stop the progression of Parry-Romberg syndrome. Reconstructive or microvascular surgery may be needed to repair wasted tissue. The timing of surgical intervention is generally agreed to be the best following exhaustion of the disease course and completion of facial growth. Most surgeons will recommend a waiting period of one or two years before proceeding with reconstruction. Muscle or bone grafts may also be helpful. Other treatment is symptomatic and supportive.
What is the prognosis for Parry-Romberg syndrome?
The prognosis for individuals with Parry-Romberg syndrome varies. In some cases, the atrophy ends before the entire face is affected. In mild cases, the disorder usually causes no disability other than cosmetic effects.
What research is being done for Parry-Romberg syndrome?
The NINDS supports research on neurological disorders such as Parry-Romberg syndrome with the goal of finding ways to prevent, treat, and cure them.
NIH Patient Recruitment for Parry-Romberg Clinical Trials
TNA -- Facial Pain Association (formerly the Trigeminal Neuralgia
March of Dimes
National Organization for Rare Disorders (NORD)
SOURCE: National Institute of Neurological Disorders and Stroke. NINDS Parry-Romberg Information Page
Last Editorial Review: 2/25/2011
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