USH Bit 5: Want to Understand How Genes Work?
Check out The Gene: An Intimate History (PBS, 2020) — a powerful 4-hour documentary that explains the history of genetics, how genes are passed down, and how scientists are working to treat rare diseases by studying genes.
Usher syndrome is caused by rare genes. To find treatments, researchers need a strong community of people who share these genes. That’s why the Usher Syndrome Coalition is connecting families, patients, and researchers — to speed up progress toward a cure.
The Gene: An Intimate History (2020) | Full Documentary, By PBS America
Episode 1: https://youtu.be/3OsWLNqoWLA?si=asFONNTHaeOh0rMZ
Episode 2: https://youtu.be/b-Af6FqaetQ?si=BS9esfjPff2U9YCq
USH Bit 4: Between You and the Chaos: Street Safety Tips for Low Vision
Navigating Indian city streets and narrow paths with low hearing and vision can be risky. Traffic is often dense, fast-moving, and chaotic. One helpful strategy is to keep an object—like a bag or a white cane—between you and the traffic. Drivers tend to avoid objects more than they avoid people.
Other Tips:
Walk during non-peak hours.
Avoid high-traffic roads.
Carry a white cane for both safety and visibility.
Walk slowly and deliberately—your companions should understand this.
Leave early to avoid rushing.
USH Bit 3: Denied health insurance due to Usher syndrome?
Summary:
Have you ever been denied health insurance due to Usher syndrome and other disabilities?
Explore the Niramaya Health Insurance Scheme (NHIS) — a government-backed plan in India offering up to ₹1 lakh coverage for people with disabilities, including deafblindness.
Have you ever been denied health insurance due to Usher syndrome and other disabilities?
Explore the Niramaya Health Insurance Scheme (NHIS) — a government-backed plan in India offering up to ₹1 lakh coverage for people with disabilities, including deafblindness.
USH Bit 2: Lost Underwater? Let the Bubbles Lead
Summary:
Swimming is fun and valuable, but underwater disorientation is common for people with Usher Syndrome types 1 and 3, due to balance and vision challenges.
- If you’re unsure which way is up, exhale gently to release air bubbles — bubbles always float upward, guiding you to the surface.
- Move slowly and stay calm to avoid worsening disorientation.
- In low visibility, pay attention to ear pressure:
- It increases as you go deeper.
- It decreases as you move toward the surface.
- Practice in shallow or familiar water to build confidence and stay safe.
USH Bit 1: Wear a P-cap
Summary:
Wear a P-cap (or baseball cap) indoors and outdoors to:
- Protect your face from overhead obstacles like open cabinet doors
- Protect your eyes from UV light that can damage the retina
- Cut down sun glare to improve daytime vision
- Reduce glare from bright indoor lights and prevent eye strain
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