Welcome to the world of Familial Adenomatous Polyposis. Much like navigating a foreign land, getting acquainted with FAP can feel utterly overwhelming. Though it can also lead to some interesting stories and adventures. For that reason, we compiled a FAP welcome kit for newly diagnosed FAP’ers. Think of this like that Lonely Planet Travel Guide: a good start to help provide some initial direction for your journey and save you from aimless Google searches. Along the way of course, you’ll supplement this with your own advice gleaned from talking to others on the same course and hidden gems you’ve discovered. (Know someone who would find this kit helpful? Click the “share” button above to send it to them.)
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A Patient’s Guide to FAP
source: Hereditary Colon Cancer Foundation
This is the most comprehensive FAP guide out there right now. It starts by breaking down each letter in FAP’s acronym and ends by breaking down the different colorectal surgery options. Trying to figure out your screening protocol or why screening is even necessary with FAP? This guide has you covered.
Familial Adenomatous Polyposis
source: St. Jude Children’s Research Hospital
Don’t be discouraged by the children’s hospital authorship, this article still has plenty of information for adults too. This covers some of the same topics as the guide above in slightly less detail. Bonus points for having separate guidelines for adults and children with FAP.
Familial Adenomatous Polyposis - An Introduction with Visuals
source: Johns Hopkins Medicine
The main focus here is colorectal cancer (although they do give a nod at the very end to FAP beyond the colon). While there are a lot of generic American Cancer Society recommendations applicable to anyone regardless of their genes, it’s nice that this intro includes post-surgery diet guidelines. One misleading sentence does need an addendum: ‘An ileostomy shouldn’t be considered a handicap but, it is an inconvenience’ just like having to take time to wipe your behind when using the restroom without an ileostomy. An ileostomy can be life saving!
The Johns Hopkins Guide for Patients and Families: Familial Adenomatous Polyposis
source: Johns Hopkins Medicine
This info may feel repetitive at this point because you’re becoming a FAPulous advocate for your health (and since a lot of this guide’s text comes directly from the other John’s Hopkins article listed above). However, there is a nifty glossary at the end of this guide so if you’ve made it this far down our resource list and are confused by some terms, check this out. Also, please keep in mind this guide is from 2000 so some info may be a little dated (it’s a good practice to check the publication date when researching FAP since new discoveries are constantly being made!).
Infographic: How to Read a Scientific Paper
Speaking of researching FAP, since it is so rare, oftentimes you may know more about this disease than your doctors! Unfortunately that can mean some of the research falls on you (but, fortunately, FAPvoice has done some of the hard work by gathering a boatload of helpful studies). Here are some tips on how to read a scientific article so you can start taking advantage of everything that’s in FAPvoice’s rareCurate. Don’t get discouraged, scientific articles are a totally different beast than newspaper articles, and don’t be afraid to print the study out to discuss with your medical team!
The Genetic Basis of Familial Adenomatous Polyposis and its Implications for Clinical Practice and Risk Management
source: The Application of Clinical Genetics
Ready to dive right into an FAP scientific article (if not, no worries, share this image from the article with your genetic counselor)? This article talks about how your mutation’s specific location (your genotype) can give us clues about the FAP complications you’re prone to (your phenotype). This information is valuable when deciding what treatment and screening protocol is right for you.
F.A.P.ology: F.A.P. Beyond the Colon
Feeling a bit burned out from reading all of the above? Just want to see a friendly face and know you’re not alone? Well that’s exactly why one of our Community Managers created the FAPulousTV YouTube channel. This video centers around the extracolonic manifestations of FAP but, the channel is filled with things from how she became newly diagnosed to ostomy/tumor fashion tips!