- Patient Comments: Parry-Romberg Syndrome - Signs and Symptoms
- Patient Comments: Parry-Romberg Syndrome - Treatment
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- What is and what causes Parry-Romberg syndrome?
- What are the signs and symptoms of Parry-Romberg syndrome?
- At what age does Parry-Romberg syndrome occur?
- Is there any treatment for Parry-Romberg syndrome?
- What is the prognosis for Parry-Romberg syndrome?
- What research is being done for Parry-Romberg syndrome?
Is there any treatment for Parry-Romberg syndrome?
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
- At NIH Clinical Center
- Throughout the U.S. and Worldwide
- NINDS Clinical Research Collaboration Trials
TNA -- Facial Pain Association (formerly the Trigeminal Neuralgia
408 W. University Avenue
Gainesville, FL 32601
Tel: 352-384-3600 800-923-3608
8301 Professional Place
Landover, MD 20785-7223
Tel: 301-459-3700 800-EFA-1000 (332-1000)
March of Dimes
1275 Mamaroneck Avenue
White Plains, NY 10605
Tel: 914-997-4488 888-MODIMES (663-4637)
National Organization for Rare Disorders (NORD)
P.O. Box 1968
(55 Kenosia Avenue)
Danbury, CT 06813-1968
Tel: 203-744-0100 Voice Mail 800-999-NORD (6673)
SOURCE: National Institute of Neurological Disorders and Stroke. NINDS Parry-Romberg Information Page