Living with Hemihyperplasia-multiple lipomatosis syndrome
A rare genetic overgrowth condition with uneven growth of one side of the body and soft fatty lumps.
Understanding Hemihyperplasia-multiple lipomatosis syndrome
One side of the body, often the limbs, grows more than the other, and this does not keep getting worse. Many slow-growing, painless fatty lumps (lipomas) can appear, especially on the back, torso, arms, legs, and fingers. Some people have blood vessel differences in the skin. GARD notes a higher risk of certain tumors in the abdomen. It starts in childhood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- General overgrowth
- Overgrowth of the fingers (macrodactyly)
- Differences in the blood vessels of the brain
- Uneven growth of one side of the body
- Painless fatty lumps under the skin
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 cancer specialists, ear, nose, and throat specialists, genetic specialists and hormone specialists.
- 3Consider genetic testing
Changes in PIK3CA are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
- 4Connect with expert centers
World Craniofacial Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Cancer specialists (oncologists); Ear, nose, and throat specialists (otolaryngologists); Genetic specialists (geneticists); Hormone specialists (endocrinologists)
- Expert care
- Expert lists: World Craniofacial Foundation
- 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 World Craniofacial Foundation 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 changes in the PIK3CA gene as linked to this condition.
Also known as: hemihyperplasia with multiple lipomatosis syndrome; hhml; hhml (hemihyperplasia multiple lipomatosis) syndrome
Patient organizations
- World Craniofacial FoundationCraniofacial anomalies · United States
- Children's Craniofacial AssociationCraniofacial anomalies · United States
- FACES: The National Craniofacial AssociationCraniofacial anomalies · United States
- myFaceCraniofacial anomalies · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Hemihyperplasia-multiple lipomatosis syndrome.
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