Laura Christensen Kieger is the author of Summer's Complaint, a book that details her and her family's journey through Familial Adenomatous Polyposis (FAP), a rare disease. Laura is active in championing awareness of the disease and how it can be detected with genetic testing.
Here is our conversation with Laura.
If you were talking to someone on the street with a base-level awareness of genetics and consumer testing . . . how would you describe “what you do” to them in a few sentences?
I am the author of Summer’s Complaint, a medical memoir that chronicles my family’s experience with an inherited cancer syndrome (Familial Adenomatous Polyposis or FAP) for over 100 years. It is an autosomal dominant condition caused by germline mutations in the adenomatous polyposis coli (APC) gene.
We became what doctors and researchers referred to in the not- so- distant past as a “cancer family.” A cancer family of eight children whose odds of having the FAP mutation essentially boiled down to a coin flip; every doctor’s visit represented the possibility of a life-threatening diagnosis.
We benefited from genetic testing once the address of our mutation was discovered by researchers in 1991. To be able to know with certainty whether or not we carried the FAP gene mutation, equipped us to move beyond a result and toward actions (aggressive surveillance, surgical interventions, and lifestyle changes) that would keep us healthy.
As an expert by experience and advocate with a background working in health care, I want to help elevate the conversations we are having related to genetic testing, pre-existing conditions, and the current state of healthcare in the US.
What’s most interesting to you about where it all stands right now? Where are the opportunities?
I find it interesting in how quickly we have advanced in diagnosing, understanding and treating genetic cancer syndromes over the past sixteen years. Since 2003, scientists and geneticists have followed the Human Genome Project into worlds we could only imagine a decade ago.
It’s as if the entire field of genetics has been doused with an accelerant. Among these advances include the FDA approving the first consumer DNA tests for disease risk and also innovations around gene therapy-the idea of modifying a person’s DNA to treat disease—which represents a major shift in medicine and is very promising.
The opportunities to be able to screen perfectly healthy want-to-be parents for genetic diseases that they don’t want to pass down to their future children. If both parents are found to be carriers of the same disease, IVF will allow for doctors to genetically screen embryos before conception. It’s incredibly exciting.
What should the casual (but very interested) reader understand about your issue?
FAP is considered a rare disease. It’s reach is global. 25 to 30% of newly diagnosed cases are “de novo” so there may not always be a strong family history as a first clue.
It is also considered to be almost 100% penetrant which is also rare. This means if you are an affected individual, the chance of developing colon cancer (if left untreated) is nearly 100% by age 50.
You are also at a greater risk than the general population for being diagnosed with other early onset cancers including thyroid, brain, liver, stomach and pancreatic cancer.
What the more than 50 hereditary cancer syndromes identified by researchers share, is that they often impact people in the prime of their lives—their most productive years. This, more than any other reason, makes me hopeful that with advancements in medicine genetics and genomics, we will improve diagnosis and treatment and perhaps even bring them to an end someday.
What’s the biggest misconception that you’ve had to face and overcome?
That we can eat the right food or exercise more or avoid lifestyle choices that are known to contribute to a cancer diagnosis and somehow avoid the devastating effects of being a carrier of the gene that causes FAP. This isn’t the case.
Of course a healthy lifestyle is critical to good health in general but in our family, it’s in our DNA, our “wiring” – we can’t escape the inevitable-just stay one step ahead of it. And that can start with genetic testing.
How could we help you? What’s one “ask” that we could include as we promote your story to readers?
I would ask that if you read Summer’s Complaint or listen to my DNA Today podcast and are inspired by our story, share it with someone who is interested in a career in medicine, biological sciences, genetics/genomics, biotechnology, etc. This is my call to courage.
We have come so far and need to continue our progress. Never give up that vital quest for knowledge. All humanity benefits from their endeavors. They are the future.
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