Always Forge Ahead w/a Purpose

By Dan, Attenuated familial adenomatous polyposis, United States, December 20, 2020

Dr. Henry T. Lynch and myself shortly after my surgery

My name is Dan, retired U.S. Navy, Operation Desert Storm; Enduring and Iraqi Freedom veteran. I'm an 8 year hereditary colon cancer WARRIOR. I underwent my first, and only colonoscopy, May 2012, at 51 years of age.  The results revealed 100 polyps embedded throughout my colon, rectum and anus. Based on these findings I was immediately referred to a certified genetic counselor for further evaluation. Germline DNA testing was initiated to rule out Familial Adenomatous Polyposis (FAP). The DNA results revealed Adenomatous Polyposis Coli (APC), confirming the diagnosis of Attenuated Familial Adenomatous Polyposis (AFAP). 

Note: AFAP is known to be due to an autosomal dominant germline mutation. It has a later onset, between 50-55 years of age. Also, there is no cure and it is estimated to affect <0.03% of the global population.

As a result of this diagnosis it was in the best practice of the medicine to undergo total-proctocolectomy w/ileostomy surgery since any polyps left unattended can develop into colon cancer. Leading up to my colonoscopy I considered myself to be in good health and had no signs of any medical problems or family history. The surgery was successfully performed July 2012.  Due to having AFAP, I undergo routine endoscopic surveillance which consists of an EGD, side-view scope and single-balloon enteroscopy.

Having a rare disease has changed me on many levels which was the impetus that launched my advocacy efforts for hereditary colon cancer and ostomy awareness. During my 22 year military career I had the honor of being an ambassador for the USA as I traveled the world on active duty.  Now I'm honored to be an ambassador for the Rare Disease community, locally and abroad. I've been a "live case presentation" for University of Hawai'i and University of Texas Health, San Antonio, Texas. I've had the opportunity to be a podcast guest for organizations in the USA; UK; Ireland; Canada and India. I've also been a blog / article contributor for countless ostomy and cancer organizations globally.  I'm in my element when talking about my hereditary colon cancer journey. 

It's important to note: AFAP was discovered by Dr. Henry T. Lynch in 1992.  He is the founding father of hereditary colon cancer research. After my surgery I had the honor to meet Dr. Lynch when he traveled to Hawai'i, and we remained in contact through the years. That said, I'm reminded of the old cliche "you can lead a horse to water..." I once heard there is a way to influence the horse to drink. Feed it salt along the way.  My hopes are my journey will be source of salt to those that hear or read about it.

The Rare Disease community is important to me because currently medical professionals receive very little training in the diagnosis and treatment of hereditary colon cancer syndromes. We must educate the population about these diseases, in remembrance of the many men and women who have lost their lives or are fighting for their lives, due to a lack of awareness. It behooves each of us, men, women, parents, siblings, educators, physicians and citizens to promote awareness of these diseases and increase the chances of saving lives.
My Vision is to share my journey locally, nationally and internationally as a source of inspiration and encouragement on overcoming adversity.

My Purpose is to educate the world about my hereditary colon cancer syndrome and the importance of early detection in efforts of continuing the legacy of Dr. Henry T. Lynch. I was a colleague of Dr. Lynch.

My mantra is: Always Forge Ahead w/a Purpose!

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