Living with Autosomal recessive nonsyndromic hearing loss 55
An inherited form of deafness linked to a region on chromosome 4.
Understanding Autosomal recessive nonsyndromic hearing loss 55
This condition causes hearing loss without other syndrome features. GARD does not list other details such as when it starts.
Signs & symptoms
Symptoms vary from person to person. GARD lists this as the most common:
- Hearing loss
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
It is linked to variation in the chromosome region 4q12-q13.2. It is autosomal recessive, so a child inherits a changed copy of a gene from each parent.
Also known as: autosomal recessive nonsyndromic deafness 55; deafness, autosomal recessive 55
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 Autosomal recessive nonsyndromic hearing loss 55.
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