Living with Paramedian nasal cleft
A rare difference in how the nose formed before birth, with a notch or split in the side of the nose.
Understanding Paramedian nasal cleft
It can range from a small notch to larger clefts of the nostril wing, and sometimes small cysts or sinuses (tiny channels) in the middle of the nose. It may occur alone or with a cleft lip or other facial differences. The top and tip of the nose are usually well formed.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet. The summary describes:
- Notch or split in the nostril
- Slightly bent wall inside the nose
- Small cysts or channels in the middle of the nose
- Cleft lip (sometimes)
- Wide-set eyes (sometimes)
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.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 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)
- 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 FACES: The National 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 this is a developmental difference that happens while the baby is forming before birth. It doesn't describe a specific cause.
Also known as: alar cleft; alar rim cleft; isolated cleft of the ala nasi; isolated coloboma of the nose; tessier number 1 cleft
Patient organizations
- FACES: The National Craniofacial AssociationParamedian nasal cleft · United States
- World Craniofacial FoundationCraniofacial anomalies · United States
- Children's Craniofacial AssociationCraniofacial anomalies · United States
- myFaceCraniofacial anomalies · United States
You are more than your diagnosis
Perspectives from people navigating life with Paramedian nasal cleft.
Explore research for Paramedian nasal cleft
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