Living with Gonadotropin-independent familial sexual precocity
An inherited condition in which boys start puberty very early, between ages 2 and 5.
Understanding Gonadotropin-independent familial sexual precocity
Females are not affected. Boys show signs of puberty in early childhood, between ages 2 and 5, such as a deepening voice, acne, body hair, underarm odor, growth of the penis and testes, and spontaneous erections. Behavior may change, with more aggression and early interest in sex. Without treatment, boys grow quickly at first but stop growing earlier than usual, so they tend to be shorter as adults than other family members.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Early puberty
- Acne
- Fast early growth and advanced bone age
- Increased body hair
- Larger penis than expected for age
- Tall stature in childhood
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 hormone specialists.
- 3Consider genetic testing
Changes in LHCGR 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); 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
Changes in the LHCGR gene cause this condition. It is inherited in an autosomal dominant way, which means one changed copy of the gene is enough.
Also known as: familial gonadotropin-independent male-limited sexual precocity; familial male-limited precocious puberty; familial testotoxicosis; fmpp; leydig cell adenoma, somatic, with precocious puberty; lhcgr peripheral precocious puberty
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 Gonadotropin-independent familial sexual precocity.
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