Living with Sensorineural hearing loss-early graying-essential tremor syndrome
A rare genetic condition with hearing loss, hair that grays early, and head tremor, starting in adulthood.
Understanding Sensorineural hearing loss-early graying-essential tremor syndrome
The three features are adult-onset hearing loss in both ears (moderate to severe), scalp hair that turns gray early, and a tremor that shows as involuntary head shaking. Other pigment changes have not been reported.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Hearing loss from nerve damage in both ears
- Hair that grays early
- Tremor, including head shaking
- Bluish-gray whites of the eyes
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 brain and nervous system specialists, ear, nose, and throat specialists, eye disease 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
- Brain and nervous system specialists (neurologists); Ear, nose, and throat specialists (otolaryngologists); Eye disease specialists (ophthalmologists); 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 lists autosomal dominant inheritance, so one changed copy of a gene can be enough. It does not name a gene.
Also known as: sensorineural deafness-early graying-essential tremor syndrome; sensorineural hearing loss, early graying, essential tremor 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 Sensorineural hearing loss-early graying-essential tremor syndrome.
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