Van der Woude Syndrome
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Van der Woude Syndrome
Other names: VDWS; VWS; Cleft lip and/or palate with mucous cysts of lower lip; Lip pit syndrome; LPS
What is Van der Woude Syndrome?
Van der Woude Syndrome is a rare genetic disorder characterized by cleft lip and/or cleft palate. Individuals with Van der Woude Syndrome may also have small depressions (pits) near the center of their lower lip. These may appear moist due to the presence of salivary and mucous glands in the pits. Small mounds of tissue may also be present on the lower lip.
Causes/Genetics
Van der Woude Syndrome is caused by mutations in the IRF6 gene, which is involved in the development of the face and mouth. These mutations interfere with the normal development of the lip and palate, leading to the characteristic features of the condition. In some cases, Van der Woude Syndrome may be inherited in an autosomal dominant pattern, which means that a person only needs to inherit one copy of the mutated IRF6 gene from either parent to develop the condition. In other cases, the condition may be caused by new mutations in the gene and thus may not be inherited.
Treatment
Treatment for Van der Woude Syndrome may involve surgical repair of the cleft lip and/or cleft palate, along with interventions to manage any associated feeding difficulties and speech problems. Genetic counseling may also be recommended for individuals and families affected by Van der Woude Syndrome.
myFace Provides Support for People Living with Van der Woude Syndrome and Other Craniofacial Conditions
myFace provides a variety of direct services and educational programs to help meet the needs of the craniofacial community, including:
(1) myFace Virtual Support Groups provide counsel and community for individuals and their families living with facial differences. These help participants to feel safe, supported, and never alone. myFace offers Support Groups for adults, adolescents, and both English-speaking and Spanish-speaking parents.
(2) Parent Guides provide resources and guidance to assist parents as they support their child’s journey.
(3) Transforming Lives Webinar Series offers webinars with craniofacial experts on topics of interest to the community.
(4) myFace, myStory Podcast Series offers monthly interviews and roundtable discussions on topics of interest to the craniofacial community.
(5) myFace’s Guide to Craniofacial Surgeries serves as a guide to patients’ surgical experience, providing in-depth information on some of the most common craniofacial surgeries.
(6) myFace | Your Impact Newsletter provides the community with regular updates.
(7) myFace Family Apartments provide free housing for out-of-town families seeking treatment in New York City.
(8) myFace Wonder Project School Assemblies provides students with the tools they need to unite against bullying and to implement acts of kindness in their schools and in their communities.
(9) myFace Events provide opportunities for the craniofacial community to gather together.
References
- Genetic and Rare Disease Information Center. (2023). Van der Woude Syndrome. National Institutes of Health. https://rarediseases.info.nih.gov/diseases/8414/van-der-woude-syndrome
