Overview
Bangstad syndrome is an extremely rare genetic condition that affects multiple body systems, particularly the endocrine (hormone-producing) system. It is also known as lipoatrophic diabetes with other features. The syndrome was first described in the medical literature and is characterized by a combination of problems including severe insulin-resistant diabetes, loss of body fat (lipoatrophy), growth failure leading to short stature, and intellectual disability. Children with this condition typically show signs early in life, including poor growth, abnormal fat distribution, and features of premature aging such as thin skin and early dental problems. The condition also involves multiple hormone glands not working properly, which is why it is classified under polyendocrine disorders. Affected individuals may develop problems with their thyroid, adrenal glands, and other hormone-producing organs. Skin abnormalities, hearing loss, and skeletal changes have also been reported. Because Bangstad syndrome is so rare, there is no specific cure or targeted treatment available. Management focuses on treating each symptom individually. Diabetes is managed with insulin therapy, though the insulin resistance can make blood sugar control very challenging. Hormone replacement therapies may be needed for other endocrine problems. A team of specialists working together is essential to provide the best possible care for affected individuals.
Also known as:
Key symptoms:
Severe insulin-resistant diabetesLoss of body fat under the skin (lipoatrophy)Short stature and poor growthIntellectual disabilityPremature aging appearanceHearing loss or deafnessThin or abnormal skinDental problems or early tooth lossThyroid gland problemsAdrenal gland problemsSkeletal abnormalitiesDelayed developmentSmall head size (microcephaly)Liver enlargement
Clinical phenotype terms (21)— hover any for plain English
Autosomal recessive
Passed on when both parents carry the same gene change; often skips generations
Infantile
Begins in infancy, roughly 1 month to 2 years old
Treatments
No FDA-approved treatments are currently listed for Bangstad syndrome.
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Specialists
View all specialists →No specialists are currently listed for Bangstad syndrome.
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Bangstad syndrome.
Community
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Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
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 is the best way to manage my child's insulin-resistant diabetes?,Which hormone levels need to be monitored and how often?,Should we pursue genetic testing, and what might it tell us?,What developmental therapies would benefit my child the most?,Are there any clinical trials or research studies we could participate in?,What emergency signs should I watch for, and what should I do if they occur?,How can we coordinate care among all the specialists involved?
Common questions about Bangstad syndrome
What is Bangstad syndrome?
Bangstad syndrome is an extremely rare genetic condition that affects multiple body systems, particularly the endocrine (hormone-producing) system. It is also known as lipoatrophic diabetes with other features. The syndrome was first described in the medical literature and is characterized by a combination of problems including severe insulin-resistant diabetes, loss of body fat (lipoatrophy), growth failure leading to short stature, and intellectual disability. Children with this condition typically show signs early in life, including poor growth, abnormal fat distribution, and features of pr
How is Bangstad syndrome inherited?
Bangstad syndrome follows a autosomal recessive inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Bangstad syndrome typically begin?
Typical onset of Bangstad syndrome is infantile. Age of onset can vary across affected individuals.