Living with Hypogonadotropic hypogonadism 12 with or without anosmia
A hormone condition with low sex hormones that delays or prevents puberty, with or without a reduced sense of smell.
Understanding Hypogonadotropic hypogonadism 12 with or without anosmia
People have low levels of the hormones LH and FSH and low sex steroids. About 40% have a normal sense of smell, and about 60% have an impaired sense of smell (Kallmann syndrome). It can first show in infancy, adolescence, or adulthood. Boys may be born with a small penis and undescended testicles. Teens and adults have incomplete sexual development.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Lost sense of smell (anosmia)
- Delayed puberty
- Small penis (micropenis)
- Undescended testicles
- No periods (primary amenorrhea)
- Little or no pubic hair
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
Your doctor may refer you to a specialist who knows rare conditions.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- 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 lists autosomal recessive inheritance. It doesn't name a gene for this type.
Also known as: eunuchoidism, familial hypogonadotropic; familial hypogonadotrophic eunuchoidism; familial idiopathic gonadotrpin deficiency; gonadotropin deficiency familial idiopathic; hh12
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 Hypogonadotropic hypogonadism 12 with or without anosmia.
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