Why DiagKNOWsis ?
There is no question that one of the most disturbing events in life is to receive a difficult health diagnosis for one's self, or a loved one. At the very least, the news is disconcerting. It may be extremely frightening.
At first it's very tempting just to follow the doctor's orders. After all, they are the people who are trained to diagnose and help us and cure us, right?
But what is far more important is that we take responsibility for our own health, and our own decision-making. We can't trust others, no matter how much they know, or what kinds of advice they can give us, to make our decisions for us.
Consider this story from the
Founder and Owner of DiagKNOWsis:
In July 2004, I found a lump on my torso. My family doctor referred me to a surgeon and the lump was removed. Two weeks later, I received a phone call from the surgeon informing me that I had been diagnosed "by two labs, independently of each other", with a very rare form of lymphoma-type cancer.
I was devastated, of course. I was immediately referred to an oncologist, but it took two weeks to be able to get that appointment. I was practically paralyzed for those two weeks just trying to come to grips with my medical condition. It rocked my entire world.
When I finally met with the oncologist, I was sent for tests: blood work, CT scans...they were all negative for any abnormalities. I had no symptoms (not unusual) and I felt just fine, although emotionally I was a wreck. My doctor -- to that point considered the expert -- still insisted I begin chemotherapy immediately because my lymphoma was considered "aggressive." If I didn't start chemo, I was told, then "you won't be around for the holidays."
At that point, my intuition and skepticism kicked in. If all my other tests were negative, what would chemo fix, and how would we know when it was fixed? I began to research, network, and study things I'd never known before. I found another doctor who had more experience with my rare cancer than my first oncologist. I looked up medical terminology, I obtained copies of my records, including pathology reports. I compared details and ultimately, I proved I didn't really have cancer at all, a point later confirmed by the National Institutes of Health in Bethesda, MD. Instead, I had a benign condition that has not presented a single problem, nor another lump, since then.
Ironically, of course, had I undergone (and survived!) the chemo, they would have declared me cured. Cured of an incurable disease.
Why This is Important to You
I never set out to prove I didn't have cancer. I only set out to learn everything I could about a very rare disease and how best to treat it. My intuition told me that chemo wasn't the answer, so what were my alternatives? In the end, my research, networking, and the partnership I established with my second-opinion oncologist proved that every ounce of effort was worth it. Today, I am as healthy as I have ever been -- and I never did need any treatment.
You, too, can approach your diagnosis with the same diligence to empower yourself with more information, and more confidence, that the choices you are making are the right ones for you. No doctor can know everything about every disease, nor can any physician keep up with all the latest research results or treatment findings.
By finding a doctor who is willing to partner with you, and therefore work in tandem with your efforts to learn more, you will begin to have the confidence that you are making the right choices. By spending some time with the resources on this website, and sharing your findings with your doctor-partner, you'll empower yourself with the knowledge you need to best move forward.
And most importantly, you will have taken responsibility for your own healthcare, providing you with the confidence you need to make the best decisions for yourself.
Since learning I was, in fact, going to survive long past the holidays, I've shared my story with many. Included are the dozens of people who have asked how I did what I did, and for advice on how they could do the same.
I'm a spiritual person. I believe everything happens for a reason, and a higher power sends us these messages to guide the choices we make. When I'm not researching treatment options for a disease I don't really have, I am a marketing consultant. So I believe that my experience has created the opportunity for me to help more people do what I have done -- learn to help themselves. Thus diagKNOWsis.org was born.
Now I'm involved in a variety of other activities, too. From being the guide to patient empowerment at About.com, to a bi-weekly newspaper column, to hosting a radio show, HealthLinkonAir, to various interviews and presentations, I am making an effort to help others become better health and medical care consumers. You can find out more about these activities at www.DiagKNOWsis.org .
Please Let Me Hear from You
|Do you have a story to tell? If you have had success using this website, and/or partnering with your physician by sharing research, I'd like to know.|
Eventually I'll add a link that shares good stories of people who have taken responsibility for their own healthcare, and have actually done the homework to improve their lives.
I wish you luck in your endeavors. I hope this site can help you. If you have information or links we can add to it, please contact us.
Every Patient's Advocate and
Author of DiagKNOWsis