A High-Stakes Puzzle

"Each part of the puzzle is crucial, and I'm the one having to remember each piece. "
~ Anne Henegar

For Anne Henegar, uncertainty has become a way of life. For 10 years she has struggled with a disease without a name, and all the confusion and frustration that has gone along with it. Her husband is a minister, so she has lived in four different cities since she first became sick and has seen numerous doctors and specialists along the way. With each new doctor and city, Anne has accumulated piles of paper: test results, x-rays, and forms. She has been forced to carry her extensive medical records to each new physician, always fearful she is missing a critical piece of information.

Anne is most concerned that a missing piece of paper could hold the key to unlock her mystery condition. "For me, my condition is very systemic. I have to have somebody that's constantly thinking of me as a whole, because one thing affects the other. Each part of the puzzle is very important, and I'm the one having to remember that." But even more than that, Anne wants to be more in control of her health, to be able to work with her doctors and look for patterns in her condition that could allow her more days of feeling good.

"Being able to access my records is important because it's my life and my health. I mean, it's who I am. All these details and the time and money that I've put into having these tests and going to see doctors, I need to have access to my records because I want to be able to analyze them and interpret them myself. I'm as much a major contributor to this investigation and discovery as they are, but I'm not privy to that information. I'm the one that lives with this body 24/7, and I think I'm one of the most important people to have the information. I feel like there's got to be some kind of pattern I've gone through with this illness, but I'm the only person who could probably see that, because no doctor has my vantage point."

The scattered information means more than just inconvenience for Anne and her family. It also means countless dollars lost due to duplicated tests and repeated procedures. "A lot of repeat tests have been done. Every time new doctors see me, they want to run their own tests. I feel like the conductor of a really bad orchestra; like I'm trying to make sense of all these incongruent parts."

More than anything, Anne wishes that her many doctors could have the same information available to them at the same time. She knows that someday, having all the facts could mean more than a convenient trip to the doctor-it could mean finally having the answers she has searched for and the peace of mind she craves.