Hi. My name is Izabella Silver.
I am a sophomore and I have Alport Syndrome. Now you’re probably wondering what that is. Alport Syndrome is a rare genetic kidney disease that also affects a person’s hearing and sight. Most boys have kidney failure in their twenties. Girls are also affected but disease progression usually occurs later. When one person is diagnosed with Alport Syndrome, the whole family is because the disease affects multiple people from different generations. About 30-60 thousand people have Alport Syndrome but a lot of the time the disease goes undiagnosed or misdiagnosed. There is still no cure. There are only medications to delay the diseases affects.
My father died from the disease. My aunt started the Alport Syndrome Foundation in his honor. Every year I walk and help set up a 5k in Phoenix, Arizona to raise awareness for this disease. And since the disease gets little attention and little funding, so every penny counts. I fight for my father, for my family, and my future family and other families all over the world affected by this destructive disease.