Living with Hearing loss-familial salivary gland insensitivity to aldosterone syndrome
A rare condition with hearing loss in both ears and salivary glands that don't respond to the hormone aldosterone.
Understanding Hearing loss-familial salivary gland insensitivity to aldosterone syndrome
People have moderate to severe sensorineural hearing loss (from the inner ear) in both ears. The salivary glands don't respond to aldosterone, which causes low sodium in the blood (hyponatremia). It is noticed in the newborn period or infancy.
Signs & symptoms
Symptoms vary. GARD lists these among the most common:
- Hearing loss in both ears (sensorineural)
- Differences in the salivary glands
- Low sodium in the blood (hyponatremia)
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 ear, nose, and throat 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
- Ear, nose, and throat specialists (otolaryngologists); 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 transmission appears to be autosomal recessive, meaning a child inherits a changed copy of the gene from each parent. It does not name the gene.
Also known as: tungland-bellman syndrome
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 Hearing loss-familial salivary gland insensitivity to aldosterone syndrome.
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