Living with Familial juvenile hypertrophy of the breast
A rare condition with excessive breast growth that can cause pain, back problems and skin sores.
Understanding Familial juvenile hypertrophy of the breast
Symptoms may include breast pain (mastalgia), skin sores or infection, posture problems, and back pain. Nerve injury can lead to loss of feeling in the nipple. The exact cause isn't known.
Signs & symptoms
Symptoms vary from person to person. GARD's summary lists these:
- Breast pain (mastalgia)
- Skin sores or infection
- Posture problems
- Back pain
- Loss of nipple sensation
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 maternal-fetal medicine specialists and women’s reproductive health specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Maternal-fetal medicine specialists (pregnancy-related); Women’s reproductive health specialists (obstetricians / gynecologists)
- 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
The exact cause is not known. GARD says hormonal and hereditary factors may be involved.
Also known as: adolescent macromastia; diffuse hypertrophy of breast; familial juvenile gigantomastia; gigantomastia, juvenile; hypertrophy of the breast, juvenile; juvenile gigantomastia
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 Familial juvenile hypertrophy of the breast.
Explore research for Familial juvenile hypertrophy of the breast
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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