Living with Isolated hemihyperplasia
A rare overgrowth condition in which one side or part of the body grows larger than the other.
Understanding Isolated hemihyperplasia
One region of the body grows more than the other, so the body looks uneven. GARD says it is linked to a higher chance of certain childhood tumors called embryonal tumors, mainly nephroblastoma and hepatoblastoma. It can be noticed at a variety of ages.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- One side or limb grows larger (hemihypertrophy)
- Uneven face (facial asymmetry)
- Uneven chest
- Curved spine (scoliosis)
- Tooth differences
- Mild intellectual disability
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.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Cancer specialists (oncologists); Ear, nose, and throat specialists (otolaryngologists); Genetic specialists (geneticists); Hormone specialists (endocrinologists)
- 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 rare disease patient organizations for support
- 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 says changes in genes (also called variants) cause this condition. It is autosomal dominant, meaning one changed copy of the gene is enough.
Also known as: hemi 3 syndrome; hemicorporal hypertrophy; hemihypertrophy; ih; isolated hemihypertrophy
Patient organizations
Rare-disease groups that can help
- 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 Isolated hemihyperplasia.
Explore research for Isolated hemihyperplasia
Explore actively recruiting Isolated hemihyperplasia studies with HealthSpark.
Find actively recruiting studies for Isolated hemihyperplasia with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
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- 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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