HSD10 disease, infantile type

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ORPHA:391428OMIM:300438E72.8
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Overview

HSD10 disease, infantile type, is a very rare genetic condition that affects how the body processes certain substances and how the mitochondria (the energy-producing parts of cells) function. It is also known as 2-methyl-3-hydroxybutyryl-CoA dehydrogenase (MHBD) deficiency or 17beta-hydroxysteroid dehydrogenase type 10 (HSD17B10) deficiency. The disease is caused by changes (mutations) in the HSD17B10 gene located on the X chromosome, which means it primarily affects boys, though carrier females can sometimes show milder symptoms. In the infantile type, babies typically appear normal at birth but begin showing symptoms within the first few months to the first two years of life. Key symptoms include progressive loss of previously acquired skills (developmental regression), seizures, problems with movement and coordination, and a weakening of the heart muscle (cardiomyopathy). Many affected children also experience vision and hearing problems. The disease tends to worsen over time because the mitochondria cannot produce enough energy for the brain, heart, and other organs. Unfortunately, there is currently no cure for HSD10 disease, infantile type. Treatment is supportive and focuses on managing symptoms such as seizures, heart problems, and nutritional needs. Some patients may receive therapies aimed at supporting mitochondrial function, but these have limited effectiveness. The prognosis for the infantile form is generally poor, with many children experiencing significant disability and shortened lifespan. Early diagnosis through genetic testing is important to provide the best possible supportive care and family planning guidance.

Also known as:

Key symptoms:

Loss of previously learned skills (developmental regression)Seizures or epilepsyWeak or floppy muscles (hypotonia)Problems with movement and coordinationWeakening of the heart muscle (cardiomyopathy)Vision loss or visual impairmentHearing lossIntellectual disabilityDifficulty feeding or swallowingFailure to grow and gain weight normallyAbnormal movements or tremorsSpeech and language delaysIrritability and excessive crying

Clinical phenotype terms (50)— hover any for plain English
Hyperkinetic movementsHP:0002487Diffuse cerebral atrophyHP:0002506Gastrointestinal dysmotilityHP:0002579Frontotemporal cerebral atrophyHP:0006892Nonprogressive encephalopathyHP:0007030Abnormality of the lower urinary tractHP:0010936Elevated brain lactate level by MRSHP:0012707Spoken word recognition deficitHP:0030391Increased CSF lactateHP:0002490Abnormality of mitochondrial metabolismHP:0003287
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 ↗OMIM ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for HSD10 disease, infantile type.

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No actively recruiting trials found for HSD10 disease, infantile type at this time.

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Search ClinicalTrials.gov ↗Join the HSD10 disease, infantile type community →

No specialists are currently listed for HSD10 disease, infantile 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 HSD10 disease, infantile type.

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Community

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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 specific mutation was found in my child's HSD17B10 gene, and what does it mean for the expected disease course?,What monitoring schedule do you recommend for the heart, brain, vision, and hearing?,What seizure medications are safest and most effective for my child?,Are there any mitochondrial supplements or experimental treatments worth trying?,Should other family members, especially females, be tested for carrier status?,What palliative care and support services are available for our family?,Are there any clinical trials or research studies we could participate in?

Common questions about HSD10 disease, infantile type

What is HSD10 disease, infantile type?

HSD10 disease, infantile type, is a very rare genetic condition that affects how the body processes certain substances and how the mitochondria (the energy-producing parts of cells) function. It is also known as 2-methyl-3-hydroxybutyryl-CoA dehydrogenase (MHBD) deficiency or 17beta-hydroxysteroid dehydrogenase type 10 (HSD17B10) deficiency. The disease is caused by changes (mutations) in the HSD17B10 gene located on the X chromosome, which means it primarily affects boys, though carrier females can sometimes show milder symptoms. In the infantile type, babies typically appear normal at birth

How is HSD10 disease, infantile type inherited?

HSD10 disease, infantile type follows a x-linked recessive inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does HSD10 disease, infantile type typically begin?

Typical onset of HSD10 disease, infantile type is infantile. Age of onset can vary across affected individuals.