MM: Daniel, when and how were you first diagnosed?
Daniel Shockley: It was during a routine colonoscopy in 2012 that they found over 100 polyps. After genetic testing I was diagnosed with Attenuated Familial Adenomatous Polyposis (AFAP), a subtype of Familial Adenomatous Polyposis. This rare genetic condition was discovered by Dr. Lynch and affects less than .03 percent of the worldwide population.
MM: What did you do after you were diagnosed?
Daniel Shockley: I was intrigued by my diagnosis and took things in stages. First I read all I could about the mutation to better understand this disease, then I had the surgery to remove my colon, rectum and anus and create an ileostomy. Next I embraced my new life. My focus since the beginning has been to embrace my condition and to better understand this disease and the impact it will have on my life.
MM: Did you always plan on becoming a patient advocate and an ambassador for colon cancer awareness?
Daniel Shockley: I have always had a great sense of faith – and feel that everything is for a purpose…this is my purpose. To educate and share my journey on behalf of those that could not share theirs. It is my mission to spread awareness about colorectal cancer, the importance of early detection and AFAP. I use my experience to advocate for legislation in support of colorectal cancer detection and treatment programs.
MM: Being that is is Memorial Day, a day that we honor and thank our military, how do you feel your experience in the military helped and continues to help you deal with your diagnosis and treatment?
Daniel Shockley: During my 22-year Navy career I learned that mental and physical strength are important attributes, especially in the face of personal or professional adversity. My training has taught me that being informed, prepared and maintaining a positive attitude while committed to the mission is instrumental in achieving success. This is now my mission.
When faced with challenges, both professionally and physically, I maintain a positive attitude and utilize numerous resources that allow me to better understand the situation. Challenges like my AFAP diagnosis are opportunities, not obstacles that can’t be overcome.
MM: You are so positive and upbeat. How do you do it?
Daniel Shockley: I feel blessed to have been able to live a life with purpose. Worrying did not cause my condition and worrying will not make it go away. As I said, I look at having AFAP as a challenge rather than an obstacle. My mindset has been and continues to be not to think about the things I can’t control. Medical issues I can’t control. What I can control is my attitude – which has always been and will remain positive.
MM: What are you doing now?
Daniel Shockley: I continue to reach out to organizations both in the U.S. and abroad to share my story as a way to inspire and encourage others. I am an advocate for the Colon Cancer Alliance (CCA), the United Ostomy Association of America (UOAA), and work with the local government in Hawaii to designate March as National Colorectal Cancer Month, the first Saturday of October as National Ostomy Awareness day and the last day of February as Rare Disease Day. I also advocate on behalf of the National Organization for Rare Disorders (NORD) for Rare Disease Day (RDD) and was co-host of the inaugural Rare Disease Day at the Hawaii State Capitol on behalf of NORD. I continue to testify in front of the Hawaii House of Representatives in Hawaii on behalf of the American Cancer Society Cancer Action Network (ACS CAN) for early screening and detection legislation.
MM: Anything else you would like to add or advice you would give someone newly diagnosed or battling colorectal cancer, diseases or syndromes?
Daniel Shockley: I always remember that AFAP, to me, stands for Always Forge Ahead with a Purpose. Remember to always maintain the ability to reach out and ask questions…do your research and find organizations that can help. But above all stay positive and find your purpose.