Event Series:
Usher Syndrome Awareness Day
Usher Syndrome Awareness Day
September 20
Usher Syndrome Awareness Day
Usher Syndrome Awareness Day is a global healthcare event focussed on spreading awareness of Usher Syndrome on a global scale. It is observed on the third Saturday of September every year. For example, in 2023, the day was celebrated on September 16 (3rd Saturday of September). To call attention to Usher syndrome, the color blue was selected. The awareness color for Usher Syndrome Awareness Day is blue. For this reason, wear a blue awareness pin, ribbon or wristband to observe this awareness event.
Wear a Blue Awareness Pin, Ribbon or Wristband for Awareness
Usher syndrome is a genetic disease characterized by either profound or mild hearing loss during or soon after birth. The patients also suffer from retinitis pigmentosa, causing night blindness along with progressive loss of visual fields. Usher syndrome usually goes unnoticed for many years. This is due to its progressive nature. Despite the diagnosis of retinitis pigmentosa, many clinicians may not connect the manifestation of hearing loss drawn to a genetic connection.
Being one of the rarest genetic diseases, the epidemiological data on the Usher population is scarce. Nevertheless, it’s important to understand the American prevalence rate of Usher Syndrome. One of every 17,000 Americans is a sufferer of Usher Syndrome. However, this is an arbitrary number which could either be increased or decreased by various factors.
Origins of USC and Usher Syndrome Awareness Day
The Usher Syndrome Awareness Day is initiated by the Usher Syndrome Coalition (USC). The USC was founded in 2008 on a mission to voice the concerns of patients suffering from Usher Syndrome. It has humble beginnings, starting with the communication of researchers and patrons through informal collaborations.
Currently, the most extensive resource of the Usher syndrome community, the Usher Syndrome Coalition, extends the hand of collaboration towards internationally renowned researchers. These researchers are from various organizations apart from representing families suffering from Usher syndrome. In 2015, as an attempt to spread awareness of Usher Syndrome, the Usher Syndrome Coalition (USC) informally declared every third Saturday of September as the Usher Syndrome Awareness Day. This initiated the event, which grew, spreading across the continents.
This awareness day is selected as it marks the arrival of the autumnal equinox in the Northern Hemisphere. This results in days that have more darkness than light. This is a narrative of Usher syndrome.
Treatment and Future Perspectives of Usher Syndrome
While currently, there has been no cure for Usher syndrome, research has been underway to find the answer for the syndrome. Early diagnosis is necessary to promote various educational programs which can help assist with hearing and vision loss. Symptomatic treatment could involve steps such as managing hearing, vision, and balance problems.
Disease and condition-specific education, knowledge, along with experience are necessary to rehabilitate Usher syndrome patients. Bioengineering solutions could provide retinal support, and continuous progression of research is seen within the field. Currently, rehabilitation with hearing aids and bilateral cochlear implantations remain the standard treatment options. Spatial orientation (attainment of balance) can be achieved by bilateral devices, which can also support residual visual function.
