Living with Melkersson-Rosenthal syndrome
A rare syndrome with repeated facial nerve weakness, swelling of the face and lips, and a grooved tongue.
Understanding Melkersson-Rosenthal syndrome
It has three main features: repeated weakness of the facial nerve, swelling episodes in the face and lips, and deep grooves in the tongue. Most people have only one or two of these. It is more common in females. It can be linked with Crohn's disease or sarcoidosis in some cases. It can start in childhood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Facial weakness (facial palsy)
- Swelling of the face and lips
- Grooved tongue (furrowed tongue)
- Swelling around the eyes
- Inflamed lips (cheilitis)
- Enlarged tongue (macroglossia)
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include allergy and immune system specialists and skin, hair, and nail specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Allergy and immune system specialists (allergists / immunologists); Skin, hair, and nail specialists (dermatologists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Facial Paralysis & Bell's Palsy Foundation and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
It is inherited in an autosomal dominant way, but a consistent genetic cause has not been found. More than one gene and environmental triggers may play a role.
Also known as: cheilitis granulomatosa of mescher-melkersson-rosenthal; cheilitis granulomatosa of miescher-melkersson-rosenthal; macrocheilia, facial palsy and edema syndrome; melkersson syndrome; melkersson's syndrome
Patient organizations
- Facial Paralysis & Bell's Palsy FoundationMelkersson-Rosenthal syndrome · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Melkersson-Rosenthal syndrome.
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