Parry-Romberg syndrome

Parry-Romberg syndrome is a rare condition that involves a slow breakdown and wasting away (atrophy) of the skin and soft tissues of the face. It can also cause the muscles, cartilage, and bones of the face to deteriorate. Parry-Romberg syndrome can affect the brain and cause neurologic problems, as well as involve the jaws and eyes. It usually occurs on the left side of the face, with progressive shrinking and deterioration.

The changes in skin usually start at the middle of the face, like the upper lip or below the nose before spreading out toward the eye, ear, and neck. The tongue, gums, and roof of the mouth can also be affected. Some people may have seizures or periods of major pain of their face.

The exact cause of Parry-Romberg syndrome is not known, but some cases may be a result of trauma, are seen in families (hereditary), or may involve infection or autoimmune causes

Neurologic symptoms may include:

• Seizures
• Weakness on one side of the body
• Migraine or other headaches
• Brain atrophy
• Facial pain
• Trigeminal neuralgia
• Vision problems (from damage to the retina and optic nerve)

Symptoms generally begin in childhood or adolescence and last for two to 20 years from onset before stabilizing. Computed tomography (CT) and magnetic resonance imaging (MRI) are most often used to diagnose neurologic complications. Parry-Romberg syndrome is more common in females than males. Symptoms can be very different for each case. In rare cases, some people may have the skin break down on the arm or chest on the affected side.

Currently, there is no cure or treatment to slow or prevent the deterioration caused by Parry-Romberg syndrome. Surgery may be needed to rebuild the damaged tissue and skin, and some cases may need a bone or muscle transplant. Immunosuppressant drugs and other medicines may help treat some neurologic symptoms. Other treatment focuses on treating other symptoms.

How can I or a loved one help improve care for people with Parry-Romberg syndrome?

Consider participating in a clinical trial so clinicians and scientists can learn more about Parry-Romberg syndrome and related disorders. Clinical research uses human volunteers to help researchers learn more about a disorder and perhaps find better ways to safely detect, treat, or prevent disease.

All types of volunteers are needed—those who are healthy or may have an illness or disease—of all different ages, sexes, races, and ethnicities to ensure that study results apply to as many people as possible, and that treatments will be safe and effective for everyone who will use them.

For information about participating in clinical research visit NIH Clinical Research Trials and You. Learn about clinical trials currently looking for people with Parry-Romberg syndrome at Clinicaltrials.gov.

Where can I find more information about Parry-Romberg syndrome?

Information may be available from the following organization:

National Organization for Rare Disorders (NORD)

Content source: https://www.ninds.nih.gov/health-information/disorders/parry-romberg-syndrome Accessed June 29, 2023.

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