Living with Cloverleaf skull-asphyxiating thoracic dysplasia syndrome
A very rare condition present before birth with a cloverleaf-shaped skull, short limbs, and a narrow chest with short ribs.
Understanding Cloverleaf skull-asphyxiating thoracic dysplasia syndrome
It is seen before birth. X-rays show short ribs, deformed long bones, and unformed bones at the ends of fingers and toes. GARD says there have been no new descriptions in the medical literature since 1987. It lists onset at birth.
Signs & symptoms
GARD doesn't list specific symptoms for this condition, but the summary describes:
- Cloverleaf-shaped skull
- Very short limbs
- Short ribs and chest differences
- Deformed long bones
- Unformed bones at fingertips and toes
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 bone and joint specialists and genetic 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
- Bone and joint specialists (orthopedists or orthopedic surgeons); Genetic specialists (geneticists)
- 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 World Craniofacial Foundation 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.
Also known as: benallegue lacete syndrome; benallegue-lacete syndrome; cloverleaf skull and asphyxiating thoracic dysplasia; cloverleaf skull, asphyxiating thoracic dysplasia syndrome
Patient organizations
- World Craniofacial FoundationCraniofacial anomalies · United States
- Children's Craniofacial AssociationCraniofacial anomalies · United States
- FACES: The National Craniofacial AssociationCraniofacial anomalies · United States
- myFaceCraniofacial anomalies · United States
You are more than your diagnosis
Perspectives from people navigating life with Cloverleaf skull-asphyxiating thoracic dysplasia syndrome.
Explore research for Cloverleaf skull-asphyxiating thoracic dysplasia syndrome
Explore actively recruiting Cloverleaf skull-asphyxiating thoracic dysplasia syndrome studies with HealthSpark.
Find actively recruiting studies for Cloverleaf skull-asphyxiating thoracic dysplasia 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
Powered by HealthSpark, our AI chat helper
I can help you find recruiting Cloverleaf skull-asphyxiating thoracic dysplasia syndrome studies. Enter a ZIP code, address or city below and I'll look within 50 miles.
Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
Get Signals for Cloverleaf skull-asphyxiating thoracic dysplasia syndrome
Stay in the loop with community stories and updates from medical researchers.
Create a living journal that talks back
HealthStory evolves private journaling with a living AI journal that talks back and asks thoughtful questions, helping you capture your Cloverleaf skull-asphyxiating thoracic dysplasia syndrome experiences more deeply and prepare for better conversations with your doctors and care team.
Your journal is private. Sharing your story publicly is a separate choice, made with Share your story above.