Living with Familial partial lipodystrophy
A rare condition in which fat is lost from the arms, legs and hips and builds up in the face, neck and belly.
Understanding Familial partial lipodystrophy
Fat is lost from the arms, legs, and hips, which can look very muscular. Fat builds up around the face and neck and inside the belly. It can begin anywhere from childhood to adulthood. Many people develop insulin resistance, which can lead to diabetes, and many have high triglycerides, which can lead to pancreatitis.
Signs & symptoms
GARD doesn't list a separate symptom list. Its summary describes:
- Fat loss in the arms, legs and hips
- Extra fat in the face, neck and belly
- Insulin resistance, sometimes diabetes
- Thick, dark, velvety skin (acanthosis nigricans)
- High triglycerides
- Fat buildup in the liver
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include genetic specialists, hormone specialists and skin, hair, and nail specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Foundation of the National Lipid Association may keep lists of experts for this condition.
Care & treatment
- Care team
- Genetic specialists (geneticists); Hormone specialists (endocrinologists); Skin, hair, and nail specialists (dermatologists)
- Expert care
- Expert lists: Foundation of the National Lipid Association
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Foundation of the National Lipid Association and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
Changes in genes cause it. It can be passed down in an autosomal dominant or autosomal recessive way.
Also known as: congenital partial lipodystrophy; familial lipodystrophy of limbs and/or trunk; fpld; genetic partial lipodystrophy; koberling-dunnigan syndrome; lipodystrophy, familial partial
Patient organizations
- Foundation of the National Lipid AssociationFamilial partial lipodystrophy · United States
- Lipodystrophy UnitedFamilial partial lipodystrophy · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Familial partial lipodystrophy.
Explore research for Familial partial lipodystrophy
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- Recruiting studies from ClinicalTrials.gov
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