Living with Hypogonadotropic hypogonadism 7 with or without anosmia
A hormone condition in which sexual development is incomplete or absent by age 18, with or without a reduced sense of smell.
Understanding Hypogonadotropic hypogonadism 7 with or without anosmia
The body does not make enough of the hormones needed for sexual development. Some people also have a reduced sense of smell, cleft palate, or hearing loss. With reduced smell, it is called Kallmann syndrome. With normal smell, it is called normosmic idiopathic hypogonadotropic hypogonadism (nIHH).
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Small testicles
- Small penis (micropenis)
- No periods (primary amenorrhea)
- Sparse armpit hair
- Sparse pubic hair
- Low sex hormones
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
Changes in the GNRHR gene (the gonadotropin-releasing hormone receptor) cause this condition. It is autosomal recessive, so a child inherits a changed copy of the gene from each parent.
Also known as: hh7; hypogonadotropic hypogonadism 7 without anosmia; idiopathic gonadotrophin deficiency; idiopathic hypogonadotropic hypogonadism
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 7 with or without anosmia.
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