Living with Acquired generalized lipodystrophy
A rare condition in which body fat is lost, leading to insulin resistance and higher heart risk.
Understanding Acquired generalized lipodystrophy
Fat under the skin is lost, mostly in the face, arms, legs, palms, and sometimes soles. The insulin resistance raises the risk of heart and blood vessel problems. GARD lists onset as any time in life.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Loss of body fat (lipodystrophy)
- Insulin resistance
- Insulin-resistant diabetes
- Heart muscle disease (cardiomyopathy)
- Muscular-looking calves
- Autoimmune problems
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
GARD says changes in genes (also called variants) cause this condition. It doesn't list a specific gene.
Also known as: acquired lipoatrophic diabetes; acquired lipodystrophic diabetes; acquired total lipoatrophy; lawrence syndrome; lawrence-seip syndrome
Patient organizations
- Foundation of the National Lipid AssociationAcquired generalized lipodystrophy · United States
- Lipodystrophy UnitedAcquired generalized lipodystrophy · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Acquired generalized lipodystrophy.
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