Living with Schisis association
A pattern in which two or more birth differences, such as neural tube defects, cleft lip or palate, omphalocele, or diaphragm hernia, occur together.
Understanding Schisis association
The group includes neural tube defects (such as anencephaly, encephalocele, and spina bifida), cleft lip or palate, omphalocele (an opening in the belly wall), and congenital diaphragmatic hernia. It is noticed during pregnancy or in newborns.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Neural tube defects (such as spina bifida)
- Cleft lip or palate
- Omphalocele
- Diaphragmatic hernia
- Premature birth
- Small size for gestational age
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 brain and nervous system specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists)
- 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 rare disease patient organizations for support
- 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 these differences occur together more often than random chance would suggest. It does not list a gene or inheritance pattern.
Also known as: schisis association syndrome
Patient organizations
Rare-disease groups that can help
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Schisis association.
Explore research for Schisis association
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- Eligibility is confirmed by the study team
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