Living with Moynahan syndrome
A rare genetic epilepsy syndrome with hair loss from birth, early seizures, intellectual disability, and delayed speech.
Understanding Moynahan syndrome
It is marked by congenital alopecia (hair loss present from birth), epilepsy that starts early, intellectual disability, and speech delay. Large stature, delayed bone development, and an abnormal brain wave test (EEG) have also been associated.
Signs & symptoms
GARD doesn't list a set of most common symptoms for this condition. Its summary describes these features:
- Hair loss present from birth
- Seizures that start early
- Intellectual disability
- Delayed speech
- Large stature
- Delayed bone development
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
Your doctor may refer you to a specialist who knows rare conditions.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- 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 describes this as a genetic syndrome but does not list a specific gene or inheritance pattern.
Also known as: alopecia-epilepsy-intellectual disability syndrome, moynahan type; alopecia, epilepsy, intellectual disability syndrome moynahan type; moynahan alopecia syndrome; moynahan's 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 Moynahan syndrome.
Explore research for Moynahan syndrome
Explore actively recruiting Moynahan syndrome studies with HealthSpark.
Find actively recruiting studies for Moynahan syndrome 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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