Lynch syndrome has been in the DNA of Jay McDaniel’s family for as long as he can remember. He recalls growing up going to funerals of several family members who died from colorectal cancer including his grandfather, two aunts, an uncle, and his father; all by the time he was only 21 years old. His family always wondered if this was a hereditary condition, however the science did not exist at the time to provide clarity.
In 2013, the effects of Lynch syndrome caused Jay to develop Stage 3 B cancer. Thanks to the efforts of his surgeon, Mark Arnold, MD and chemotherapy at the Ohio State University Comprehensive Cancer Center, Jay went into remission. Unfortunately, he encountered a second battle with cancer in 2016.
His initial relationship with certified genetic counselors began when American Board of Genetic Counseling (ABGC) Diplomate and former president, Heather Hampel, MS, CGC approached him after his first surgery in 2013 and asked Jay if she could do a series of genetic tests.
“When Heather tested me for Lynch syndrome, my results were positive. She then asked if she could test my three daughters because of its hereditary risks and our family history. I said absolutely, please do,” remembers Jay. “Fortunately, all of the testing was paid for by a grassroots cancer drive called Pelotonia. Out of all three of my daughters, the results from my oldest came back positive. She now she gets annual testing that will most likely save her life.”
In 2016, Jay and 10 other members of the Ohio Colorectal Cancer Prevention Initiative were offered the chance to take place in a clinical trial for immune therapy. “After 18 months of the immune therapy, I experienced minimal side effects compared to chemotherapy. I believe getting into this new form of treatment, at the right time, is most likely saving my life right now,” said Jay.
Through Jay’s experience with certified genetic counselors like Heather, not only have his daughters been tested for Lynch syndrome, but 37 of his family members have been tested as well. Thanks to a family reunion, Jay was able to share his experience with genetic testing and give loved ones the ability to seek preventive care, providing clarity on their health status.
With his influence as the Public Advisor for the American Board of Genetic Counseling, Jay now hopes to increase awareness of the importance of early detection of genetic conditions such as Lynch syndrome, utilizing the help of a certified genetic counselor to help manage personal and familial risk.
“We’ve learned in the last five years that this disease is so much more preventable,” says Jay. “If I could help just one person realize their risk, help their family understand their risk and possibly prevent their suffering, I’ve done my job. Being tested is the solution to stop this disease in your generation. Knowledge is key, because for generations my family has been dying and now we know why.”
To learn more about Jay McDaniel’s journey as a survivor of Lynch syndrome, you can read more on his journey here
or contact him at James.McDaniel@huntington.com
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