Living with Cleft lip/palate-deafness-sacral lipoma syndrome
A rare syndrome with cleft lip or palate, profound hearing loss, and a fatty lump near the tailbone.
Understanding Cleft lip/palate-deafness-sacral lipoma syndrome
A sacral lipoma is a fatty lump near the base of the spine. Other findings included skin tags on the heel and thigh, a sac-like spinal bulge (anterior sacral meningocele), and a dislocated hip. GARD says the way it is inherited is probably autosomal or X-linked recessive. It lists onset in the newborn period and infancy.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Cleft lip or palate
- Profound hearing loss
- Fatty lump near the tailbone
- Hip dislocation
- Missing teeth
- Poor balance (ataxia)
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 ear, nose, and throat specialists and genetic specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
American Cleft Palate Craniofacial Association and World Craniofacial Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Ear, nose, and throat specialists (otolaryngologists); Genetic specialists (geneticists)
- Expert care
- Expert lists: American Cleft Palate Craniofacial Association, World Craniofacial Foundation
- 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 American Cleft Palate Craniofacial Association 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
GARD says it is probably inherited in an autosomal or X-linked recessive way. It doesn't name a gene.
Also known as: cleft lip/palate-hearing loss-sacral lipoma syndrome; cleft palate and cleft lip with deafness and sacral lipoma syndrome; lowry yong syndrome; lowry-yong syndrome
Patient organizations
- American Cleft Palate Craniofacial AssociationCleft lip/palate-deafness-sacral lipoma syndrome · United States
- World Craniofacial FoundationCraniofacial anomalies · United States
- Children's Craniofacial AssociationCraniofacial anomalies · United States
- FACES: The National Craniofacial AssociationCraniofacial anomalies · United States
- myFaceCraniofacial anomalies · United States
You are more than your diagnosis
Perspectives from people navigating life with Cleft lip/palate-deafness-sacral lipoma syndrome.
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