Experts also believe PKD doesn't get a lot of attention because the symptoms of the disease don't affect children.
"There may not be as much of an emotional impact," said Perrone.
Even though there's no cure for PKD and treatment involves managing symptoms, experts say ongoing research offers a lot of hope.
"There's been an explosion of research in the past couple of decades," said Perrone.
"The goal of current research is to slow down the natural course history of PKD so patients can do much better for much longer," said Steinman. He added that there are currently five studies underway that are investigating the effects of different drugs on cyst growth. Results of another study recently completed should be available in the next year or so.
"Cysts are the disease, so if we can stop the cysts from growing, we can hopefully slow down the disease," said Steinman. Although he said the drugs under investigation do show the potential for stopping cyst growth, more research is needed to determine how long they can stave off kidney failure.
Experts say more research is also needed to eventually develop a cure.
Brazell holds out a lot of hope for the current research as well as future studies, and not only for his own sake. He has an 11-month-old daughter.
"The research is going so well, so by the time it may be a problem for her, it's my feeling that it won't be a problem."