Lynch Syndrome Heroes
Posted on March 31, 2016, 6:36 AM
By: Dave Dubin
Many people have wondered what their fifteen minutes of fame would be like. Mine came in 2012, when I was voted the 12th most attractive colon cancer survivor of that year, and featured on the “Colondar,” a calendar of men and women diagnosed with colon cancer before age 50. In my case, I was 29 when I began to show symptoms and was then diagnosed with colorectal cancer. But really, it started much earlier. My grandfather had colon cancer in his sixties. My father had his first colon cancer in his early forties. My brother had colon cancer in his mid-thirties. Some people inherit money. I inherited Lynch Syndrome, a genetic mutation that increases a person’s risk for certain cancers, and the most common inherited cause of colorectal cancer. Many individuals with a Lynch mutation develop related cancers at very early ages, decades younger than the average age of diagnosis for the general population. The association of this mutation with cancer is so strong, we refer to individuals with Lynch Syndrome who have not yet been diagnosed with a cancer as “previvors.”
Numbers talk. According to the American Gastroenterological Association (AGA), statistically, one in every 440 Americans has Lynch syndrome, but as much as 95% of these people have not been diagnosed with the condition. Most people find out the hard way: First they are diagnosed with cancer and then learn it’s related to having a Lynch gene mutation. Knowing your family cancer history can help determine if you are at risk, even if it was NOT necessarily colon cancer. Every day, we talk to people who start thinking more seriously about their family history as they come to understand that, in addition to colon cancer, a history of endometrial cancer, ovarian cancer, liver cancer and other cancers are all indications to get checked for Lynch Syndrome.
In 2012, my wife and I launched AliveAndKickn, using my story to bring awareness to Lynch Syndrome, which as I like to say, is the genetic predisposition to colon cancer, endometrial cancer, other cancers…and soccer. Despite all of the surgeries and procedures, I still play and coach the beautiful game of soccer. In AliveAndKickn, soccer is our metaphor for raising awareness about Lynch Syndrome, from soccer events with professional teams and youth clubs, to speaking engagements with organizations and at conferences.
My fifteen minutes of fame as a “Colondar” pin-up may be over, and I can teach a lot of kids to kick and score on the soccer field, but I’m hoping that AliveAndKickn and I will be remembered for creating the HEROIC Registry, our newest endeavor.
The HEROIC Registry, Hereditary Cancer Research Champions, is a first-of-its-kind, patient-centric database that enables patients and previvors to take an active role in supporting research into Lynch Syndrome genetic mutations. The HEROIC Registry allows patients, survivors and previvors to contribute their own medical information and their experiences living with Lynch Syndrome and its associated cancers. The information on the HEROIC Registry will help researchers develop new treatments, better understand the various Lynch genetic mutations, write medical papers and conduct further studies and clinical trials. If other Lynch Syndrome patients are like me, they typically have 4-5 different doctors, often with different hospital affiliations – from their primary care physician to oncologist, gastroenterologist, gynecologist, urologist, and possibly others.
With today’s technology, patients are no longer passive bystanders in managing their conditions. They want an active role in their treatment and future, and to be engaged in the research process. The HEROIC Registry serves as a central repository for insights, experiences and important relevant health information, including genetic testing results, from patients, survivors and previvors with Lynch Syndrome and its associated cancers, directly involving every contributor in the effort to better understand and manage this condition.
The social aspect of sharing information can be just as important as the medical aspect. While sharing such personal information might seem risky, we’ve learned that people also do not want to be reduced to anonymous numbers or statistics. Increasingly, they are demanding to be involved in an open and transparent, but secure, process. Participants on the HEROIC Registry can share as much or as little of their health information as they want, when they want, and with whom they want. They control who views it, what information they would like to share and which research studies they are willing to participate in. Ensuring that their medical data remains secure is our utmost priority, and we protect patient privacy with cutting-edge technology. Patients want their data to be in the right hands – theirs and the researchers and clinicians who can make a difference.
Will this effort lead to a cure? Maybe. By aggregating large amounts of data from thousands of patients living with Lynch, researchers will be able to analyze the conditions relevant to specific mutations and help answer questions most important to patients. This invaluable patient data will help researchers shape the types of studies they conduct in ways that are most beneficial to the patient. And individuals, hospitals, laboratories, physicians, other providers, and insurance companies can feel comfortable with the security provided by the HEROIC registry.
I have three sons. So far, the oldest has tested positive for a Lynch gene mutation, meaning he has up to an 80% chance of developing colon cancer (and other cancers) in his lifetime, in all likelihood at an early age. His younger brothers haven’t been tested yet. While my family’s history is one of cancer, it’s also one of resilience. I’ve been given a voice, literally and figuratively, to make a difference, and I hope that sharing my story has set an example. Now, with the HEROIC Registry, it’s time for others affected by Lynch Syndrome to be at the forefront.
My name is Dave Dubin, founder and 3x Lynch Syndrome survivor, and #IAmAliveAndKickn!
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