8 Way to Help Your Doctor Save Your Life

Most people believe that doctors make you better. But each of us needs to work with our doctors, helping them do their best job for us.

Joyce Graff Executive Director, Cancer Research Fund - VHL Alliance

HMOs often limit the doctor to 12 minutes per patient. You need to work at making the most of this brief visit.

MANAGING A TEAM
I’m here to empower patients – teaching them how to assemble the necessary medical professionals, and help them to communicate and work together.

RISK OF NOT KNOWING
Thousands of people in the US currently have no clear diagnosis for their medical problems – delayed diagnosis often means permanent disability or death

ONE IN TEN AMERICANS

has a rare disease. 30 million Americans are dealing with some rare disease – the experience is not rare, and getting a correct diagnosis is particularly challenging.

ONE PERSON IN THREE HUNDRED

carries a genetic risk factor for cancer. Are there other cases of cancer in your family that you and your doctor should know about?

HOW TO BE A POWERFUL PATIENT

1. BE THERE Don’t ignore symptoms, ask for help.
2. MANAGE YOUR FEARS Don’t deny them, but manage them. Breathe. Gather data. Do you need to worry?
3. NEVER WITHHOLD CLUES Don’t expect your doctor to guess what you’re not saying
4. KNOW YOUR GENES Understand genetic risk factors by making a family health tree and seeking genetic counseling
5. KEEP A LOG Map your pain or discomfort by time of day, time of month, what you eat. Take a copy for the doctor to keep in your file and review.
6. PLAY BALL Assemble a team of professionals who bring the right skills to the game: your health
7. TAKE NOTES. Take a friend or a tape recorder -- you will forget the details.
8. DO YOUR HOMEWORK Read up on your diagnosis, or your tumor type. Is this one incident all there is? or is there more to it?
9. The Cancer Research Fund and the VHL Family Alliance International are dedicated to improving diagnosis, treatment, and quality of life for individuals and families affected by von Hippel-Lindau disease and related tumor conditions. They provide information in 8 languages, fund research, and help connect people with the best available medical information.