Usher Syndrome Awareness Day is a day dedicated to Usher Syndrome. Celebrated every third Saturday in September, in 2022 it falls on September 17th. This holiday was created to raise public awareness about this disease.
Usher’s syndrome is a hereditary disease that occurs at the genetic level. For a long time, it was undiagnosed. Doctors did not assume the symptoms were related and had one common cause. The disease was discovered by ophthalmologist Charles Usher in 1914. To date, about 400 thousand people worldwide have been diagnosed with this disease.
The disease manifests itself if a person has two mutated genes. If it is only one, then the carrier can pass it on to their child, but they themselves will not get sick. The child will be born sick, provided that both parents are carriers of the damaged gene.
In modern medicine, there are three types of disease. The first type is the most difficult – the child is initially born deaf with impaired brain function, which is expressed in impaired coordination and gait. Children with the second and third types of the disease are usually born without serious disorders, but hearing deteriorates over time, up to its complete loss. Regardless of the type, a common symptom is retinitis pigmentosa, which in the worst cases can lead to loss of vision.
Timely diagnosis makes life easier for a person. You can purchase hearing aids and cochlear implants, and start learning sign language and Braille early. In the worst-case scenario, skills will already be formed that will allow you to live with the loss of the senses.
How to take part
- Provide financial support to a national organization dedicated to research into Usher’s Syndrome. Donations can be made on the official website https://www.cureusher.org.
- Watch interviews with people who suffer from this syndrome or read medical articles on the topic of Usher syndrome. Learn more about the disease.
- Share a post on social networks, giving the basic information about this disease. Get together with friends and hold activities in schools to raise awareness about this disease.
When is Usher Syndrome Awareness Day celebrated in 2023?
Usher Syndrome Awareness Day is observed on the third Saturday of September each year.