The Power of Community: Usher Syndrome Families Inch Closer to a Cure
Advocacy After an Usher syndrome diagnosis, families tend to isolate themselves—but networking with others may hold the key to a cure.
People with Usher syndrome are born with hearing loss and have progressive vision loss caused by retinitis pigmentosa. Some have vestibular dysfunction, or balance issues. There is little more frightening than to be deaf and learn that you may also lose your vision, so a diagnosis of Usher syndrome can be devastating to an individual as well as a family. However, there is hope, and it starts with the participation of families in the Usher syndrome community.
You are not alone
More than 400,000 people in the world have Usher syndrome. There is a large community of patients, families, doctors and researchers all focused on Usher syndrome. Help raise awareness to ensure they have the resources they need to find treatments for this terrible disease.
All in the family
The global research community agrees that families with Usher syndrome hold the key to a cure. Families are the pool of candidates needed for clinical trials. They are the source of natural history information. The only way we know how the disease normally progresses is by following families. They are the source of genetic information.
"The only way we know how the disease normally progresses is by following families. They are the source of genetic information."
Families are also the source of awareness about the disease and the source of funding and advocacy. Families have the ability to influence governmental organizations and other groups to put research funding toward Usher syndrome.
Put simply, there will be no treatments without the participation of Usher syndrome families. And yet, because the diagnosis is traumatizing and the disease socially isolating, many families do not participate in the Usher syndrome community.
Combat the social isolation by joining an Usher syndrome family support network. The best source of hope for families with Usher syndrome is other families with Usher syndrome.
Connect with the Usher syndrome community on social media or by participating in an awareness campaign. Join a patient registry to stay informed about clinical trials and the latest research news. Then, help spread the word through family networks and social media. Attend Usher syndrome focused conferences and network with other families and researchers. Participate in studies conducted by the National Institutes of Health (NIH) or other reputable institutions. Understanding how Usher syndrome works starts with people with Usher syndrome.