Brachydactyly-mesomelia-intellectual disability-heart defects syndrome

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Overview

Brachydactyly-mesomelia-intellectual disability-heart defects syndrome is an extremely rare genetic condition that affects multiple parts of the body. The name describes its main features: brachydactyly (shortened fingers and toes), mesomelia (shortening of the middle segments of the arms and legs, meaning the forearms and lower legs are shorter than expected), intellectual disability, and heart defects present from birth. This syndrome is sometimes referred to as Albright-like syndrome or has been described under various case reports in the medical literature. People with this condition typically show signs from birth or early infancy. The skeletal abnormalities are usually noticeable early on, with short stature being common. Heart defects can range from mild to severe and may require surgical correction. Intellectual disability can vary in degree but often affects learning and daily functioning. Some individuals may also have distinctive facial features and other skeletal differences. Because this syndrome is so rare, there is no specific cure or targeted treatment. Management focuses on addressing each symptom individually. Heart defects may need surgical repair, educational support can help with intellectual challenges, and orthopedic care may be needed for bone and limb differences. A team of specialists working together provides the best care for affected individuals.

Also known as:

Key symptoms:

Shortened fingers and toesShort forearms and lower legsIntellectual disability or learning difficultiesHeart defects present from birthShort statureDistinctive facial featuresDelayed developmental milestonesBone and skeletal abnormalitiesPossible speech delaysLimited range of motion in joints

Clinical phenotype terms (11)— hover any for plain English
Abnormal mitral valve morphologyHP:0001633MesomeliaHP:0003027Abnormal shoulder morphologyHP:0003043Hernia of the abdominal wallHP:0004299Long thoraxHP:0100818
Inheritance

Autosomal recessive

Passed on when both parents carry the same gene change; often skips generations

Age of Onset

Neonatal

Begins at or shortly after birth (first 4 weeks)

Orphanet ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for Brachydactyly-mesomelia-intellectual disability-heart defects syndrome.

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No actively recruiting trials found for Brachydactyly-mesomelia-intellectual disability-heart defects syndrome at this time.

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No specialists are currently listed for Brachydactyly-mesomelia-intellectual disability-heart defects syndrome.

View NORD Rare Disease Centers ↗Undiagnosed Disease Network ↗

Treatment Centers

8 centers
🏥 NORD

Baylor College of Medicine Rare Disease Center

Baylor College of Medicine

📍 Houston, TX

🏥 NORD

Stanford Medicine Rare Disease Center

Stanford Medicine

📍 Stanford, CA

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

🔬 UDN

UCLA UDN Clinical Site

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Mayo Clinic Center for Individualized Medicine

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

Travel Grants

No travel grants are currently matched to Brachydactyly-mesomelia-intellectual disability-heart defects syndrome.

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Community

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Latest news about Brachydactyly-mesomelia-intellectual disability-heart defects syndrome

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Caregiver Resources

NORD Caregiver Resources

Support, advocacy, and financial assistance for caregivers of rare disease patients.

Mental Health Support

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Family & Caregiver Grants

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Social Security Disability

Learn how rare disease patients may qualify for SSDI/SSI benefits.

Questions for your doctor

Bring these to your next appointment

  • Q1.What type of heart defect does my child have, and does it need surgery?,What level of intellectual disability should we expect, and what therapies are recommended?,Should we pursue genetic testing, and what might the results tell us?,How often should my child have follow-up appointments with each specialist?,Are there any physical activities my child should avoid because of their heart condition?,What early intervention services should we start right away?,What is the chance that future children could also have this condition?

Common questions about Brachydactyly-mesomelia-intellectual disability-heart defects syndrome

What is Brachydactyly-mesomelia-intellectual disability-heart defects syndrome?

Brachydactyly-mesomelia-intellectual disability-heart defects syndrome is an extremely rare genetic condition that affects multiple parts of the body. The name describes its main features: brachydactyly (shortened fingers and toes), mesomelia (shortening of the middle segments of the arms and legs, meaning the forearms and lower legs are shorter than expected), intellectual disability, and heart defects present from birth. This syndrome is sometimes referred to as Albright-like syndrome or has been described under various case reports in the medical literature. People with this condition typi

How is Brachydactyly-mesomelia-intellectual disability-heart defects syndrome inherited?

Brachydactyly-mesomelia-intellectual disability-heart defects syndrome follows a autosomal recessive inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does Brachydactyly-mesomelia-intellectual disability-heart defects syndrome typically begin?

Typical onset of Brachydactyly-mesomelia-intellectual disability-heart defects syndrome is neonatal. Age of onset can vary across affected individuals.