Retina International Usher Syndrome Special Interest Group
Precautions and recommendations for people living with vision and/or hearing loss due to Usher Syndrome.
For family members and people living in the same household:
BEFORE and AFTER each physical contact/interaction/communication:
- Wash your hands for 20 seconds as recommended by the World Health Organisation (WHO) with liquid soap or use alcoholic hand sanitizer.
For people not living in the same household, such as personal assistants, caretakers and/or interpreters (sign language, close sign language, tactile language, finger alphabet).
BEFORE each contact/interaction:
- Wear face masks, disposable or self-made and washable, when lip reading use transparent masks.
- Wash hands or use hand sanitizer according to WHO recommendations.
- Gloves (disposable or cotton) are recommended.
AFTER each contact/interaction:
- Dispose masks and gloves in household waste or wash cotton masks and gloves (60 °).
- Use hand sanitizer or wash hands for 20 seconds with liquid soap.
In public areas:
- Leave home only in accordance with your national containment directives.
- Never touch face (mouth, nose, eyes) to prevent infection.
- Wash hands or use hand sanitizer after each contact with surfaces or packaging material (plastic, metal, cardboard, paper) on public transport, in taxis or when shopping for daily needs.
- Wear masks and gloves (disposable or washable).
- In case of shortage, try to save surgical and FFP masks for front liners, healthcare professionals, first responders, caretakers and other vulnerable groups at higher risk.
- Use disposable tissue or sneeze into mask or elbow to protect others from droplets.
For medical consultations:
- Always contact your doctor or healthcare provider by phone or email before any consultation.
- See a healthcare professional or go to hospital only in case of absolute emergency (also retinal detachment or exams and treatments crucial to prevent vision loss are defined as urgent by ophthalmologists).
- Apply additional precautions as described above.
- Evaluate if regular assessments and follow-ups (eye, ENT, …) can or will be postponed.
In case of hospitalization and/or treatment due to COVID-19:
- Don’t self-medicate! There has been much discussion about Chloroquine in the media. There is evidence that this medication can be harmful for the retina and can cause toxicity and therefore should only be taken under the supervision of your physician.
- Treatments to be prescribed by healthcare professionals only and take in accordance with your eye expert (Chloroquine use contra-indicated with retinal and some neuroophthalmological/mitochondrial conditions).
Informative and reliable resources to visit during COVID-19:
International COVID-19 information WHO:
https://www.who.int/health-topics/coronavirus#tab=tab_1
For Europe: European Center of Disease Prevention and Control CDPC:
For the US: COVID-19 Information Center of Disease Control and Prevention CDC: