Psychomotor regression-oculomotor apraxia-movement disorder-nephropathy syndrome

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ORPHA:505242OMIM:617595E83.2
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Overview

Psychomotor regression-oculomotor apraxia-movement disorder-nephropathy syndrome is an extremely rare inherited condition that affects the brain, nervous system, and kidneys at the same time. It is sometimes referred to by its Orphanet code ORPHA:505242. The condition is linked to problems with how the body handles manganese, a metal that is normally found in small amounts in the body and is essential for health. When manganese builds up to harmful levels in the body, it damages the brain and kidneys. Children with this syndrome typically develop normally at first, but then begin to lose skills they had already learned — such as walking, talking, or using their hands — a process called psychomotor regression. They also develop problems controlling their eye movements (oculomotor apraxia), meaning their eyes have difficulty moving smoothly or on command. Movement problems such as tremors, stiffness, or unsteady walking are also common. At the same time, the kidneys stop working properly, which can lead to serious health complications. There is currently no cure for this condition. Treatment focuses on managing symptoms, supporting kidney function, and trying to reduce manganese levels in the body. Because this disease is so rare, care is highly specialized and usually involves a team of doctors from different fields working together.

Also known as:

Key symptoms:

Loss of previously learned skills such as walking or talking (psychomotor regression)Difficulty controlling eye movements (oculomotor apraxia)Tremors or shakingStiff or rigid musclesUnsteady or uncoordinated walking (ataxia)Kidney disease or kidney failure (nephropathy)Intellectual decline or learning difficultiesHigh levels of manganese in the bloodAbnormal brain changes seen on MRI scansWeakness in the arms or legs

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 Psychomotor regression-oculomotor apraxia-movement disorder-nephropathy syndrome.

View clinical trials →

No actively recruiting trials found for Psychomotor regression-oculomotor apraxia-movement disorder-nephropathy syndrome at this time.

New trials open frequently. Follow this disease to get notified.

Search ClinicalTrials.gov ↗Join the Psychomotor regression-oculomotor apraxia-movement disorder-nephropathy syndrome community →

No specialists are currently listed for Psychomotor regression-oculomotor apraxia-movement disorder-nephropathy 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 Psychomotor regression-oculomotor apraxia-movement disorder-nephropathy syndrome.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Psychomotor regression-oculomotor apraxia-movement disorder-nephropathy 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

Financial assistance programs specifically for caregivers of rare disease patients.

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 stage is my child's disease at, and what changes should I expect over the next few years?,Should my child start chelation therapy, and what are the risks and benefits?,What dietary changes are needed to reduce manganese intake, and can we see a specialist dietitian?,How often should kidney function be tested, and what signs should prompt an urgent visit?,Are there any clinical trials or research studies my child might be eligible for?,What therapies — physical, occupational, or speech — would help most right now?,Should other family members be tested for this condition?

Common questions about Psychomotor regression-oculomotor apraxia-movement disorder-nephropathy syndrome

What is Psychomotor regression-oculomotor apraxia-movement disorder-nephropathy syndrome?

Psychomotor regression-oculomotor apraxia-movement disorder-nephropathy syndrome is an extremely rare inherited condition that affects the brain, nervous system, and kidneys at the same time. It is sometimes referred to by its Orphanet code ORPHA:505242. The condition is linked to problems with how the body handles manganese, a metal that is normally found in small amounts in the body and is essential for health. When manganese builds up to harmful levels in the body, it damages the brain and kidneys. Children with this syndrome typically develop normally at first, but then begin to lose skil

How is Psychomotor regression-oculomotor apraxia-movement disorder-nephropathy syndrome inherited?

Psychomotor regression-oculomotor apraxia-movement disorder-nephropathy syndrome follows a autosomal recessive inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does Psychomotor regression-oculomotor apraxia-movement disorder-nephropathy syndrome typically begin?

Typical onset of Psychomotor regression-oculomotor apraxia-movement disorder-nephropathy syndrome is childhood. Age of onset can vary across affected individuals.