Living with Acquired partial lipodystrophy
A rare condition, also called Barraquer-Simons syndrome, with loss of fat from the face, neck, shoulders, arms, and chest.
Understanding Acquired partial lipodystrophy
Fat is lost from the face, neck, shoulders, arms, forearms, chest, and belly. Onset usually begins in childhood after a viral illness, and it affects females more often than males. After puberty, women may gain fat in the hips and legs. Around 1 in 5 people develop a kidney condition, usually more than 10 years after onset. Autoimmune disorders can also occur. GARD lists onset as childhood to adulthood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Loss of fat in certain areas (lipoatrophy)
- Autoimmune problems
- Low complement C3 level
- Muscle tissue disease
- Hearing impairment
- Premature aged appearance of the face
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 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
- 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 doesn't describe a specific cause. Onset usually follows a viral illness in childhood.
Also known as: apld; barraquer syndrome; barraquer-simons disease; barraquer-simons syndrome; hollander-simons syndrome; lipodystrophic diabetes with partial lipoatrophy
Patient organizations
- Foundation of the National Lipid AssociationAcquired partial lipodystrophy · United States
- Lipodystrophy UnitedAcquired partial lipodystrophy · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Acquired partial lipodystrophy.
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