More than once I have heard one of our members say to me that they helped a friend who had a serious illness. “Even though I know nothing about that condition medically, I was able to help with strategy, with managing a group of medical specialists, with managing the emotions and stresses that go with any illness.”

Since 2006 I have worked with public relations advisers to shape the message of the VHL Family Alliance in a way that resonates with people outside of our specific community.

What has come out of that effort is a radio show called the Powerful Patient on webtalkradio.net. This one-hour show is carried weekly on webtalkradio.net on the internet. Shows are maintained in the Archive at http://powerfulpatient.org. You can sign up for the podcasts, or play an MP3 file over the internet.

The theme of the show is taking charge of your health, and creating teamwork with the medical professionals you need to “win the game” of keeping you healthy. It is not limited to VHL -- it applies equally well to any complex medical condition, which we define as being any condition where you are dealing with more than one medical specialist.

The Powerful Patient radio show is a service of the Cancer Research Fund of the VHL Family Alliance, raising public awareness of VHL and sharing the “Eight Ways You Can Help Your Doctor Save Your Life”, which are helpful strategies for people with any complex health condition. You can get a free copy of this publication by signing up at the website
http://powerfulpatient.org

The article on Edbassmaster and his sister Maureen, on pages 8-9 of this issue, is taken from that show. You can hear the full interview at powerfulpatient.org, which includes clips from some of Ed’s skits on YouTube. The program guide that accompanies the interview includes the pointers to the skits quoted in the show.

There is an interview with Joyce Graff about how the theory of the Powerful Patient has evolved over the past fifteen years. In learning how to manage our health with VHL, we have learned valuable lessons about life and about health management that apply to any complex medical condition.

We interviewed Clenton Winford II about the diagnosis and treatment of his pheochromocytoma, and played excerpts from his album, Wayfaring Stranger. Bits of this album are featured as theme music for the show.

Ahead in the next few months are shows about caregiving, and at least one broadcast from Africa!