Living with Diprosopus
A rare developmental condition before birth in which parts of the face are duplicated on a single head.
Understanding Diprosopus
It may be linked with differences in the heart, digestive tract, lungs, and central nervous system. Cleft lip and palate have been reported in rare cases. GARD lists onset during pregnancy.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Duplicated facial structures
- Differences in the eyes and vision
- Differences in the nose
- Differences in the ears
- Heart septum differences
- Differences of the brain (such as anencephaly)
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 maternal-fetal medicine specialists and women’s reproductive health specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Fetal Health Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Maternal-fetal medicine specialists (pregnancy-related); Women’s reproductive health specialists (obstetricians / gynecologists)
- Expert care
- Expert lists: Fetal Health 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 Fetal Health Foundation
- 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 arises as a developmental defect during embryo formation. It doesn't describe a specific cause.
Also known as: craniofacial duplication; diprosopia; monocephalus diprosopus
Patient organizations
- Fetal Health FoundationDiprosopus · United States
You are more than your diagnosis
Perspectives from people navigating life with Diprosopus.
Explore research for Diprosopus
Explore actively recruiting Diprosopus studies with HealthSpark.
Find actively recruiting studies for Diprosopus with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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