Pyruvate dehydrogenase E3 deficiency

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ORPHA:2394OMIM:246900E74.4
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Overview

Pyruvate dehydrogenase E3 deficiency, also known as dihydrolipoamide dehydrogenase (DLD) deficiency or lipoamide dehydrogenase deficiency, is a rare inherited metabolic disorder. It is sometimes referred to as maple syrup urine disease type III because it shares some features with that condition. The disease affects the E3 component (dihydrolipoamide dehydrogenase) of several important enzyme complexes in the body, including the pyruvate dehydrogenase complex, the alpha-ketoglutarate dehydrogenase complex, and the branched-chain alpha-keto acid dehydrogenase complex. These enzymes are essential for converting food into energy inside cells, particularly in the mitochondria — the energy-producing parts of cells. Because multiple enzyme complexes are affected, the disease causes a buildup of lactic acid, branched-chain amino acids, and other harmful substances in the blood. Symptoms typically appear in infancy or early childhood and can include poor feeding, vomiting, low muscle tone, developmental delays, seizures, and episodes of metabolic crisis often triggered by illness or fasting. The liver can also be affected, sometimes leading to liver failure. There is currently no cure for this condition. Treatment focuses on managing symptoms, preventing metabolic crises, and supporting nutrition. A carefully controlled diet, supplements such as thiamine (vitamin B1) and riboflavin (vitamin B2), and avoidance of fasting are common strategies. Despite treatment, the disease can be severe and life-threatening, especially in its most serious forms.

Also known as:

Key symptoms:

Low muscle tone (floppiness)Poor feeding in infancyVomitingFailure to gain weight and grow normallyDevelopmental delaysIntellectual disabilitySeizuresEpisodes of severe metabolic crisisHigh levels of lactic acid in the bloodLiver problems or liver failureFatigue and low energyRapid breathingMaple syrup-like odor in urine during crisesMovement problemsComa during severe episodes

Clinical phenotype terms (28)— hover any for plain English
Hepatic encephalopathyHP:0002480Elevated circulating branched chain amino acid concentrationHP:0008344Increased urine alpha-ketoglutarate concentrationHP:0012402HypercoagulabilityHP:0100724
Inheritance

Autosomal recessive

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

Age of Onset

Variable

Can begin at different ages, from infancy through adulthood

Orphanet ↗OMIM ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for Pyruvate dehydrogenase E3 deficiency.

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No actively recruiting trials found for Pyruvate dehydrogenase E3 deficiency at this time.

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No specialists are currently listed for Pyruvate dehydrogenase E3 deficiency.

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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

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Caregiver Resources

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Questions for your doctor

Bring these to your next appointment

  • Q1.How severe is my child's enzyme deficiency, and what does that mean for their outlook?,What specific dietary plan should we follow, and can we see a metabolic dietitian?,What is the emergency protocol if my child becomes sick or stops eating?,Should other family members or future pregnancies be tested for this condition?,What developmental therapies should we start, and how often?,Are there any clinical trials or new treatments being studied for this condition?,How often should blood tests and follow-up visits be scheduled?

Common questions about Pyruvate dehydrogenase E3 deficiency

What is Pyruvate dehydrogenase E3 deficiency?

Pyruvate dehydrogenase E3 deficiency, also known as dihydrolipoamide dehydrogenase (DLD) deficiency or lipoamide dehydrogenase deficiency, is a rare inherited metabolic disorder. It is sometimes referred to as maple syrup urine disease type III because it shares some features with that condition. The disease affects the E3 component (dihydrolipoamide dehydrogenase) of several important enzyme complexes in the body, including the pyruvate dehydrogenase complex, the alpha-ketoglutarate dehydrogenase complex, and the branched-chain alpha-keto acid dehydrogenase complex. These enzymes are essentia

How is Pyruvate dehydrogenase E3 deficiency inherited?

Pyruvate dehydrogenase E3 deficiency follows a autosomal recessive inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.