Living with Hemihypertrophy of lower limb
A rare genetic condition where one or both legs grow longer or wider than normal.
Understanding Hemihypertrophy of lower limb
The leg can be longer, wider, or both. The growth may involve the whole limb or only the upper or lower part. It can be mild with no trouble moving, or the leg can be very enlarged with stiff knee and ankle. Some people have blood vessel differences such as varicose veins, and muscle pain.
Signs & symptoms
Symptoms vary from person to person. Based on the summary, they can include:
- Overgrowth of one or both legs
- A longer or wider leg
- Stiff knee or ankle in more severe cases
- Varicose veins
- Muscle pain (myalgia)
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 bone and joint specialists and genetic specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Bone and joint specialists (orthopedists or orthopedic surgeons); Genetic specialists (geneticists)
- 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.
Also known as: congenital overgrowth of lower limb; lower limb hypertrophy; overgrowth of one leg
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 Hemihypertrophy of lower limb.
Explore research for Hemihypertrophy of lower limb
Explore actively recruiting Hemihypertrophy of lower limb studies with HealthSpark.
Find actively recruiting studies for Hemihypertrophy of lower limb 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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