Living with Cleft palate with or without ankyloglossia, X-linked
A genetic condition with a cleft palate and a short, tight tissue under the tongue (tongue-tie), passed on through the X chromosome.
Understanding Cleft palate with or without ankyloglossia, X-linked
The cleft palate can be complete, partial, or submucous (hidden under the lining). People may also have differences in the uvula and short tissue under the tongue, as well as dental differences like missing or misshapen teeth. Mild finger differences have also been reported. GARD lists onset in the newborn period and infancy.
Signs & symptoms
GARD doesn't list specific symptoms for this condition, but the summary describes:
- Cleft palate
- Tongue-tie (ankyloglossia)
- Differences in the uvula
- Missing or misshapen teeth
- Mild finger differences
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.
- 3Consider genetic testing
Changes in TBX22 are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
- 4Connect with expert centers
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: 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 World Craniofacial 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
GARD says changes in the TBX22 gene cause this condition. It is X-linked, which means the gene is on the X chromosome.
Also known as: cleft palate with ankyloglossia; x-linked cleft palate and ankyloglossia
Patient organizations
- 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
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