Familial Adenomatous Polyposis, or FAP, accounts for roughly 1 percent of hereditary colorectal cancer and carries an extremely high lifetime risk of colon cancer and elevated risks for other exceedingly rare cancers. It is an autosomal dominant condition caused by germline mutations in the adenomatous polyposis coli (APC) gene. By the age of fifty, nearly 99 percent of untreated FAP patients will have developed cancer. This is the dark shadow that has lingered over one family since at least 1911, when a matriarch was first seen at the Mayo Clinic in Rochester, Minnesota for symptoms that would become commonplace in her descendants. Three of her five children died in their thirties with what they’d come to call summer’s complaint. Her granddaughter, genetically programmed by a defect on her 5th chromosome also developed cancer, which would ultimately take her life.
This is that family’s sometimes tragic story. As told by a daughter, aunt, and sister who has been surrounded by its relentless destruction her entire life, Summer’s Complaint is at once a testament to the courage of those one family has lost and a journey toward understanding hereditary predispositions to disease and how best to combat them.
I spent 30 years working in Pharmaceutical R&D. As a drug development professional turned patient advocate educator trying to understand the various journeys that patients, caregivers, and family members take when disease enters their lives, I found author Laura Kieger’s story and storytelling compelling. Summer’s Complaint is part medical memoir, part case study, about multiple generations of one family struggling with a rare genetic predisposition to cancer. Those of us in healthcare, clinical research, and patient advocacy can learn much by reading Summer’s Complaint. -Kevin Freiert MBA, Principal & Founder, Salem Oaks Consulting
Kudos, Laura Kieger, on an excellent book!
-Mary Dunkle, Vice President of Educational Initiatives, National Organization for Rare Disorders (NORD)
