We've partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases will share their unique stories; the second in our series comes from Laura Haywood-Cory, who survived a rare and potentially fatal heart disorder.
Three years ago, when I was 40 years old, I had a heart attack, caused by a rare thing called a Spontaneous Coronary Artery Dissection, or SCAD.
Arteries are constructed in layers, and a dissection is when the inner layer tears away from the middle later. The torn flap of artery creates a blockage in blood flow to the heart, which can cause a heart attack, cardiac arrest, or death.
After two cardiac catheterizations, six stents, and a week in the hospital, I was sent home with precious little information other than: "SCADs are rare. You're lucky you survived."
I'm grateful to the doctors, cath lab staff and everyone at the hospital who took good care of me. I know they can't possibly know about every long-tail edge case that walks in their doors. But the first two weeks home from the hospital were terrifying. I would keep myself awake for as long as I possibly could, because I was afraid that if I went to sleep, I might never wake up again. That's a scared and lonely place to be at 3 AM.
As a child of the digital age, I went searching for answers online. As part of my research I came across an online support community, where I connected with other women who'd not only had a SCAD but were several years down the road of recovery and were doing well. These women have been a real lifeline for me, and if not for them, I'd still be lonely, scared, and without any real information on my condition.
Recently I was reading KevinMD and found a post of interest. In the piece, called "Saving patients from internet health information," Stewart Segal, MD, expresses his frustration with patients who self-diagnose via Google and then decide, unilaterally, on different courses of treatment than what he has prescribed for them.
As a patient with a rare condition that most cardiologists have never encountered, I and others like me have had to become our own experts. And since our numbers are small, we aren't able to gather for support in person; we do it online.
It seems to me that the answer isn't to discourage people from seeking medical information from "Dr. Google," but rather to teach people, starting in school, some critical thinking skills. How to sift the online wheat from the chaff and how to determine which sites have credible information, versus ones that are just selling the latest formula of snake oil. Snopes.com exists for a reason, after all.
As patients, we need to not expect perfection from our doctors until we achieve it in ourselves. And doctors need to give themselves permission to not know everything and to not feel threatened by empowered, educated patients. Who, yes, look things up online.
Laura Haywood-Cory lives in Durham, North Carolina. She recently received a 2012 Woman's Day Red Dress Award for her role in a Mayo Clinic study on the feasibility of recruiting patients through the use of social media.
