I was diagnosed with FAP at age 13 in 1970 and had a proctocolectomy one week after my 14th birthday. My father, Carleton Myers, and father’s brother (Uncle Elmer) both had been diagnosed with FAP which they inherited from their mother who died with colon cancer at age 28 in 1928. My oldest and 3 younger brothers also were diagnosed with FAP and also had the proctocolectomy surgeries in early teenage years.
I became greatly aware of the enormity of hereditary colorectal conditions such as FAP and Lynch Syndrome during a colorectal disorders family day conference put on by the University of Michigan in 2014 which inspired me to become active in spreading greater awareness of these hereditary genetic disorders by beginning a Hereditary Colorectal Conditions Peer Discussion Group through the Cancer Support Community of Greater Ann Arbor (Michigan) in 2015. This group continues to meet each 3rd Thursday of every month via ZOOM.
Upon Carleton’s 90th birthday on June 16th, 2016, I helped to orchestrate the very first ever FAP AWARENESS DAY in the state of Michigan. Since that date, the week which includes June 16th has been designated as FAP AWARENESS WEEK in Michigan and at least two other states through government proclamations! Carleton Myers lived until 96, likely becoming the longest living person with FAP. These days, I continue to live a quality life, staying physically active with long distance running, spreading awareness of FAP and Lynch Syndrome, and keeping an active social life.