PKU reporter Kevin Alexander talks with Debbie Colyer, the first Australian diagnosed with PKU, about a novel PKU summer camp for kids. The National PKU Youth Camp, supported by the PKU Association of New South Wales, serves children 8 to18 years old and was created to unite kids with this condition. The goal is to build supportive communities for these campers, provide tools for kids to independently manage their condition for life and offer them a fun and memorable experience.
Being diagnosed with cancer at any age is devastating, but cancer in the prime of life is a double blow. The I’m Too Young For This! Cancer Foundation continues to give young adults a sense of hope and keep them in the fight for life. Founder Matthew Zachary discusses some of the workshops, sessions, and speakers at the upcoming OMG! Cancer Summit in Las Vegas.
Ken West, a Seattle native, was born with sickle cell anemia, a disease where red blood cells develop into abnormal shapes similar to crescents or “sickles.” Ken’s youth was plagued with frequent hospital visits, forcing him to quickly live and adjust. The disease worsened in his 20’s as a result of poor disease management, but he quickly learned the do’s and don'ts for managing his condition. With powerful drugs and expert care, Ken is able to decrease “sickle cell crisis” and damage to his organs, living a near normal life.
Laura Schildkraut talks with Andrew Schorr, founder of Health Talk, host and founder of Patient Power and a leading patient information advocate. Information professionals can play a vital role in helping people make decisions about their healthcare options. Wanda Pratt, Associate Professor at the University of Washington Information School and School of Medicine, discusses how people find, manage and use medical information.
Most doctors are well meaning. They do not deliberately make mistakes or have their patients suffer. But within the past 11 days I suffered when two internists “got it wrong.” It took a third doctor, a cancer specialist, to get it right and ease my pain. The story has lessons for you.