Living with Autosomal dominant nonsyndromic hearing loss 17
An inherited form of hearing loss that is not linked to other health problems.
Understanding Autosomal dominant nonsyndromic hearing loss 17
This condition can be passed down from parents to their children. It is called nonsyndromic because hearing loss is the main feature. GARD does not list other details such as when it starts.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet, but hearing loss is the main feature.
- 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 caused by a change in the MYH9 gene, which is located on chromosome 22. It is autosomal dominant, so a change in one copy of the gene can cause it.
Also known as: autosomal dominant nonsyndromic deafness 17; deafness, autosomal dominant 17; dfna17 nonsyndromic hearing loss and deafness
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 dominant nonsyndromic hearing loss 17.
Explore research for Autosomal dominant nonsyndromic hearing loss 17
Explore actively recruiting Autosomal dominant nonsyndromic hearing loss 17 studies with HealthSpark.
Find actively recruiting studies for Autosomal dominant nonsyndromic hearing loss 17 with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
Powered by HealthSpark, our AI chat helper
I can help you find recruiting Autosomal dominant nonsyndromic hearing loss 17 studies. Enter a ZIP code, address or city below and I'll look within 50 miles.
Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
Get Signals for Autosomal dominant nonsyndromic hearing loss 17
Stay in the loop with community stories and updates from medical researchers.
Create a living journal that talks back
HealthStory evolves private journaling with a living AI journal that talks back and asks thoughtful questions, helping you capture your Autosomal dominant nonsyndromic hearing loss 17 experiences more deeply and prepare for better conversations with your doctors and care team.
Your journal is private. Sharing your story publicly is a separate choice, made with Share your story above.