What is Melkersson-Rosenthal syndrome?
Melkersson-Rosenthal syndrome is a rare neurological disorder characterized by recurring facial paralysis, swelling of the face and lips (usually upper lip), and the development of folds and furrows in the tongue. Onset is in childhood or early adolescence.
After recurrent episodes (ranging from days to years in between), swelling may persist and increase, eventually becoming permanent. The lip may become hard, cracked, and fissured with a reddish-brown discoloration. Melkersson-Rosenthal syndrome may recur intermittently after its first appearance, and it can become a chronic (long-lasting) disorder.
The cause of Melkersson-Rosenthal syndrome is unknown, but there may be a genetic predisposition. It can be symptomatic of Crohn's disease or sarcoidosis.
Treatment is symptomatic and may include nonsteroidal anti-inflammatory drugs (NSAIDs) and corticosteroids to reduce swelling, as well as antibiotics and immunosuppressants. Surgery may be recommended to relieve pressure on the facial nerves and to reduce swollen tissue, but its effectiveness has not been established. Massage and electrical stimulation may also be prescribed.
How can I or my loved one help improve care for people with Melkersson-Rosenthal syndrome?
Consider participating in a clinical trial so clinicians and scientists can learn more about Melkersson-Rosenthal 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 Melkersson-Rosenthal syndrome at Clinicaltrials.gov.
Where can I find more information about Melkersson-Rosenthal syndrome?
Information may be available from the following resources:
National Organization for Rare Disorders (NORD)