Multiple epiphyseal dysplasia, Lowry type

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ORPHA:166016OMIM:601560Q78.8
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Overview

Multiple epiphyseal dysplasia, Lowry type (also called Lowry-Wood syndrome or MED Lowry type) is an extremely rare inherited skeletal disorder that affects the growth centers (epiphyses) at the ends of bones, particularly in the arms and legs. This condition belongs to a group of bone disorders known as skeletal dysplasias. People with this condition typically experience short stature, joint problems, and abnormal development of the ends of their long bones. The condition may also be associated with small head size (microcephaly), intellectual disability, and other features that distinguish it from other forms of multiple epiphyseal dysplasia. The disease usually becomes apparent during childhood when growth delays and skeletal abnormalities are noticed. Children may have difficulty walking, joint stiffness, and pain. X-rays often show irregular or flattened epiphyses, which are the growing parts of bones near the joints. Over time, early-onset arthritis can develop in affected joints. There is currently no cure for this condition. Treatment focuses on managing symptoms and may include physical therapy, pain management, orthopedic interventions, and supportive care for any associated developmental or neurological concerns. Because this condition is so rare, much of the medical understanding comes from a very small number of reported cases, and management is often individualized based on each patient's specific needs.

Also known as:

Key symptoms:

Short statureJoint pain and stiffnessAbnormal bone development at the ends of long bonesSmall head size (microcephaly)Intellectual disability or developmental delayWaddling gait or difficulty walkingEarly-onset arthritisLimited range of motion in jointsFlat or irregular appearance of bone growth plates on X-rayShort limbs relative to the bodyDelayed motor milestonesCongenital heart defects (in some cases)

Clinical phenotype terms (20)— hover any for plain English
Abnormal sternum morphologyHP:0000766Epiphyseal dysplasiaHP:0002656Delayed epiphyseal ossificationHP:0002663Fibular hypoplasiaHP:0003038Flattened epiphysisHP:0003071Dislocated radial headHP:0003083Small epiphysesHP:0010585Fragmented epiphysesHP:0100168Cleft hard palateHP:0410005Knee flexion contractureHP:0006380Fixed elbow flexionHP:0006471
Inheritance

Autosomal recessive

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

Age of Onset

Childhood

Begins in childhood, roughly ages 1 to 12

Orphanet ↗OMIM ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for Multiple epiphyseal dysplasia, Lowry type.

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No actively recruiting trials found for Multiple epiphyseal dysplasia, Lowry type at this time.

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No specialists are currently listed for Multiple epiphyseal dysplasia, Lowry type.

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 Multiple epiphyseal dysplasia, Lowry type.

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Community

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Caregiver Resources

NORD Caregiver Resources

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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 specific type of skeletal dysplasia does my child have, and how was the diagnosis confirmed?,Should we pursue genetic testing, and what would the results mean for our family?,What specialists should be part of our care team?,What can we do to protect the joints and manage pain as my child grows?,Are there any signs or symptoms we should watch for that would need urgent attention?,What developmental or educational support services would you recommend?,Are there any research studies or registries we should consider joining?

Common questions about Multiple epiphyseal dysplasia, Lowry type

What is Multiple epiphyseal dysplasia, Lowry type?

Multiple epiphyseal dysplasia, Lowry type (also called Lowry-Wood syndrome or MED Lowry type) is an extremely rare inherited skeletal disorder that affects the growth centers (epiphyses) at the ends of bones, particularly in the arms and legs. This condition belongs to a group of bone disorders known as skeletal dysplasias. People with this condition typically experience short stature, joint problems, and abnormal development of the ends of their long bones. The condition may also be associated with small head size (microcephaly), intellectual disability, and other features that distinguish it

How is Multiple epiphyseal dysplasia, Lowry type inherited?

Multiple epiphyseal dysplasia, Lowry type follows a autosomal recessive inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does Multiple epiphyseal dysplasia, Lowry type typically begin?

Typical onset of Multiple epiphyseal dysplasia, Lowry type is childhood. Age of onset can vary across affected individuals.