Living with Alobar holoprosencephaly
A severe form of holoprosencephaly in which the brain doesn't divide into two halves, often with facial differences.
Understanding Alobar holoprosencephaly
Facial features can be severe and may include a single eye (cyclopia) or a flattened or tube-like nose (ethmocephaly or cebocephaly). It is present in newborns and infants.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- A single brain ventricle
- Eyes set very close together (hypotelorism)
- Eye differences
- Differences in the brainstem
- Abnormal breathing pattern
- Problems with the autonomic nervous system
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, genetic specialists, hormone specialists and seizure and epilepsy specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Epilepsy Foundation and Pituitary Network Association may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Genetic specialists (geneticists); Hormone specialists (endocrinologists); Seizure and epilepsy specialists (epileptologist)
- Expert care
- Expert lists: Epilepsy Foundation, Pituitary Network Association
- 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 Families for HoPE 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 doesn't describe a cause for this condition yet.
Patient organizations
- Families for HoPEAlobar holoprosencephaly · United States
- Epilepsy FoundationEpilepsy · United States
- Pituitary Network AssociationPituitary deficiencies · United States
You are more than your diagnosis
Perspectives from people navigating life with Alobar holoprosencephaly.
Explore research for Alobar holoprosencephaly
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- 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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