Living with Familial angiolipomatosis
A rare inherited condition with several benign fatty lumps under the skin of the arms, legs, and trunk.
Understanding Familial angiolipomatosis
The lumps are yellow, firm, and about 1 to 4 cm wide. They appear on the arms, legs, and trunk, and may extend deep between muscles and tendons without invading them. They run in families. They may be tender or mildly painful when pressed and do not go away on their own.
Signs & symptoms
GARD describes these features in its summary:
- Several firm lumps under the skin
- Yellow lumps 1 to 4 cm wide
- Lumps on the arms, legs, and trunk
- Mild pain or tenderness when pressed
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 and skin, hair, and nail specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Genetic specialists (geneticists); Skin, hair, and nail specialists (dermatologists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- 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 Children's Skin Disease Foundation
- 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 this condition. It is autosomal recessive, which means a child inherits a changed copy of the gene from each parent. GARD does not name the gene.
Also known as: angiolipoma microthromboticum
Patient organizations
- Children's Skin Disease FoundationSkin diseases · United States
Broader rare-disease groups
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Familial angiolipomatosis.
Explore research for Familial angiolipomatosis
Explore actively recruiting Familial angiolipomatosis studies with HealthSpark.
Find actively recruiting studies for Familial angiolipomatosis with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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