How we’re facing familial adenomatous polyposis

When my father-in-law was in his 30s, he was diagnosed with colorectal cancer as a result of familial adenomatous polyposis (FAP), a genetic
condition that stimulates the production of polyps and increases a
person’s cancer risk. My husband, Jesse, learned that he too had
familial adenomatous polyposis when he was 15 years old.

By the time I met Jesse in college, he’d already had a colectomy, a
procedure that removed his colon. So after we got married, we had a
lot of conversations about whether we should have children and risk
passing this condition onto them. Jesse and I decided to put our faith
in God and not let a genetic condition get in the way of our life.

Talking to our children about familial adenomatous polyposis

Now, we’re proud parents of an 8-year-old son and a 5-year-old
daughter, and we talk openly with them about familial adenomatous polyposis.

Starting at about age 3, we showed them anatomy books and explained
that their daddy doesn’t have a colon. Slowly and through regular
conversation, we explained the potential impact that familial
adenomatous polyposis may have on their bodies, too. We relied on
reading materials to help us create talking points and answer
questions properly.

These conversations also helped us prepare our children for Jesse’s
Whipple procedure, which he underwent last November after doctors
discovered high-grade dysplasia in his duodenum. The Whipple procedure
removed Jesse’s duodenum, gall bladder as well as a part of his
stomach and pancreas.

Coping with fears of passing on familial adenomatous polyposis

Yes, my children sometimes get scared about the possibility of
having familial adenomatous polyposis, but we support them and try to
quell their fears. We remind them that their daddy’s already had a
colectomy and the Whipple procedure, and he still really loves his
life. He can eat what he wants, he can still have a family and his
quality of life is great.

And yes, I sometimes worry about whether they’ve inherited the
disease, but I try not to dwell on it because it’s not something any
of us can control. None of us knows what’s in store for us. In fact,
Jesse and I choose to count ourselves among the lucky because at least
we know that familial adenomatous polyposis runs in his family and we
can be proactive about reducing his cancer risk and that of our
children. Many people aren’t as fortunate.

We hope we’ll be able to have our children tested by their 10th
birthdays, and we are so pleased to know that MD
will be there for us as they get screened and for any
potential surgeries they may need to improve their quality of life and
enable them to hopefully lead cancer-free lives. Mostly, we try to
remind ourselves that whatever happens, everything will be OK.

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