Drydocked- How early detection in a routine exam saved his life and his rare life began

The Rare hour with Christopher Velona

In today's episode, we chat with a gentleman who was diagnosed with a rare disease in mid-life!!

Meet Dan Dry-Dock Shockley (Veteran)

Retired Navy, Operation Desert Storm; Enduring and Iraqi Freedom veteran and 10-year rare disease virtual international live-case presentation. Diagnosed w/hereditary colon cancer syndrome, attenuated FAP, in 2012. As a result of hereditary colon cancer syndrome diagnosis and colon removal surgery, I have an ostomy. An ostomy is a type of surgery that creates an opening in the abdomen that causes a change in the way stool exits the body. So I wear a prosthetic pouching system. You would never know it if I didn’t tell you.

It's important to note that attenuated FAP is an autosomal dominant germline mutation. Dr. Henry T. Lynch, the founding father of hereditary cancer research, is credited with discovering AFAP. It's estimated that less than .03 percent of the global population are impacted by AFAP. I undergo routine endoscopic surveillance to monitor its progress. Last year I underwent successful pancreas-sparing duodenectomy resection surgery @ Stanford University Hospital. This surgery is directly related to AFAP. I've embraced this diagnosis from the onset and created an acronym for ADAPT: Attitude Determines the Ability for a Positive Transformation.

Early detection is vital. I'm living proof. My purpose is to educate the world about AFAP as a virtual international live-case presentation for AFAP, continuing the legacy of Dr. Henry T. Lynch, on the importance of early detection in hopes of saving lives.

Here are some groups that Dan collaborates with pertaining to attenuated FAP:

http://fapgene.com/

https://coloncancerpreventionproject.org/

You can follow him on social media:

Twitter: @dryshockley

LinkedIn: Dan Dry Dock Shockley