Living with Multiple symmetric lipomatosis
A rare condition in which fatty lumps grow on both sides of the neck, shoulders, upper arms, and upper body.
Understanding Multiple symmetric lipomatosis
The lumps form around the neck, shoulders, upper arms, and upper trunk. Symptoms vary a lot from person to person. Fatty tissue usually builds up over time and may cause pain or less neck movement. Lipomas can press on a nerve and cause nerve damage (peripheral neuropathy). It can start at a variety of ages, and cancer is rare.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Multiple fatty lumps (lipomas)
- Joint pain
- Joint stiffness
- Nerve damage (peripheral neuropathy)
- Pins and needles feeling
- Changes in walking (gait disturbance)
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.
- 3Consider genetic testing
Changes in MFN2 are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
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
GARD lists the MFN2 gene and says the exact cause is unknown. It may be linked to changes in mitochondrial DNA. Inheritance can be autosomal dominant or autosomal recessive.
Also known as: benign symmetrical lipomatosis; cephalothoracic lipodystrophy; cervical symmetrical lipomatosis; familial benign cervical lipomatosis; launois bensaude lipomatosis; launois-bensaude lipomatosis
Patient organizations
- Fat Disorders Research SocietyMultiple symmetric lipomatosis · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Multiple symmetric lipomatosis.
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