OBSOLETE: Glycerol kinase deficiency, infantile form

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ORPHA:284408
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Overview

Glycerol kinase deficiency (GKD), infantile form, is a rare inherited metabolic condition that affects how the body processes glycerol, a simple fat molecule. This condition is caused by changes in the GK gene located on the X chromosome. The infantile form is considered a severe presentation that typically appears in the first months of life. Because this Orphanet entry is now marked as obsolete, it has been reclassified under the broader category of glycerol kinase deficiency, which includes a spectrum ranging from a mild (isolated) form to a complex form that may overlap with neighboring gene deletions on the X chromosome. In the infantile form, babies may experience metabolic crises with vomiting, low blood sugar (hypoglycemia), and metabolic acidosis, which means the blood becomes too acidic. Some children also show adrenal insufficiency (where the adrenal glands do not produce enough hormones), developmental delays, and muscle weakness. The condition can be life-threatening if not recognized and treated early. Elevated glycerol levels in the blood and urine are hallmark findings. Treatment focuses on managing metabolic crises, replacing adrenal hormones if needed, and providing supportive care. With early diagnosis and proper management, outcomes can be improved, though the severity varies depending on the extent of the genetic change.

Key symptoms:

Episodes of vomitingLow blood sugar (hypoglycemia)Metabolic acidosis (blood becomes too acidic)Adrenal insufficiency (adrenal glands not working properly)Developmental delayMuscle weaknessPoor feeding in infancyFailure to thrive or poor weight gainLethargy or excessive sleepinessSeizures during metabolic crisesElevated glycerol in blood and urineIntellectual disability in some casesDehydration during illness

Inheritance

X-linked recessive

Carried on the X chromosome; typically affects males more than females

Age of Onset

Infantile

Begins in infancy, roughly 1 month to 2 years old

Orphanet ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for OBSOLETE: Glycerol kinase deficiency, infantile form.

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No actively recruiting trials found for OBSOLETE: Glycerol kinase deficiency, infantile form at this time.

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No specialists are currently listed for OBSOLETE: Glycerol kinase deficiency, infantile form.

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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

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Caregiver Resources

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Questions for your doctor

Bring these to your next appointment

  • Q1.Does my child have the isolated or complex form of glycerol kinase deficiency?,Are neighboring genes like the dystrophin gene or DAX1 gene also affected?,Does my child need adrenal hormone replacement therapy?,What should I do if my child becomes sick — what is the emergency protocol?,What dietary changes should we make?,What developmental therapies would benefit my child?,Should other family members, especially boys, be tested for this condition?

Common questions about OBSOLETE: Glycerol kinase deficiency, infantile form

What is OBSOLETE: Glycerol kinase deficiency, infantile form?

Glycerol kinase deficiency (GKD), infantile form, is a rare inherited metabolic condition that affects how the body processes glycerol, a simple fat molecule. This condition is caused by changes in the GK gene located on the X chromosome. The infantile form is considered a severe presentation that typically appears in the first months of life. Because this Orphanet entry is now marked as obsolete, it has been reclassified under the broader category of glycerol kinase deficiency, which includes a spectrum ranging from a mild (isolated) form to a complex form that may overlap with neighboring ge

How is OBSOLETE: Glycerol kinase deficiency, infantile form inherited?

OBSOLETE: Glycerol kinase deficiency, infantile form follows a x-linked recessive inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does OBSOLETE: Glycerol kinase deficiency, infantile form typically begin?

Typical onset of OBSOLETE: Glycerol kinase deficiency, infantile form is infantile. Age of onset can vary across affected individuals.