Living with Familial multiple lipomatosis
A rare inherited condition with many fatty lumps under the skin, mostly on the trunk, arms and legs.
Understanding Familial multiple lipomatosis
It is diagnosed when multiple lipomas occur in more than one family member, often over several generations. The lumps are usually painless but can be numerous and large, which may affect quality of life. Onset is at a variety of ages.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Multiple fatty lumps (lipomas)
- Lipomas under the skin (subcutaneous)
- Lumps that are usually painless
- Lumps on the trunk, arms and legs
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 Fat Disorders Research Society 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
FML appears to be autosomal dominant, which means one changed copy of a gene is enough. The underlying genetic cause is not known yet.
Also known as: familial multiple lipomata; fml; lipomatosis, multiple
Patient organizations
- Fat Disorders Research SocietyFamilial multiple lipomatosis · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Familial multiple lipomatosis.
Explore research for Familial multiple lipomatosis
Explore actively recruiting Familial multiple lipomatosis studies with HealthSpark.
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- 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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