Living FAPulously

By Christina, Familial adenomatous polyposis, United States, March 3, 2021

My name is Christina and I am the 3rd generation people affected by FAP, yet was the 1st generation (and person) to get genetic testing, seek treatment, and get information to all other living family members.  My story started when I was just 22 years old with a newborn son.  After recovering from childbirth, I began getting back in the gym ( I trained in MMA fighting ) and noticed that I was experiencing abnormal unquenchable thirst that NEVER WENT AWAY.  I also has issues maintaing my weight and once a month had a bowel movement of bright red blood.  This started me on the path of medical discovery that would take two (2) years and around 12 doctors in five (5) different states to uncover.  By the time I was scoped, I had Stage 1 Colon Cancer at the tender age of 24.  Because of the amount of polyps in my colon (well over 1000), my colon and rectum had to be removed.  I year later I did genetic testing and had the markers for F.A.P.  It was carried on my paternal grandfather's side of the family as his mother's side had it.  They were from Germany.  My grandfather passed away when I was only 10 and died of cancer in multiple organs.  No one thought this was a genetic thing until my diagnosis.  I spent the next 5 years getting aquainted with experts and reccomending genetic testing for my entire family.  In my family its 99%  that if a parent has it, the children have it.  My grandparents had a large family consisting of multiple sets of twins and multiple singles.  11 aunts and uncles in total.  All tested positive except for the last aunt and her four children.  I am the oldest by the first set of twins.  All of my siblings as well as my 22 year old son have this genetic disorder.  I have had multiple surgeries to remove pre cancerous areas of my GI tract and am now in "remission" with only desmoid tumors to contend with currently.  Everyone of my family members as well as myself all have different degrees of progression with mine seemingly to be the most aggressive the earliest.  I am thankful for the diagnosis as most doctors told me I had a high metabolism and hemmoroids and to come back when I was thirty (30).  I would not be here along side the many many loved ones that took a different path and are no longer with us.  I am grateful that events like this exist because I want the next generation to have access to more information than I did as a scared concerned confused 22 year old many moons ago,  The coolest thing about this genetic disorder is the "Unbreakable" factor regarding our bone structure.  I have never broken a bone and never have been able to swim as I sink like a weight due to dense bone structures.  I also have a massively strong jawline that has helped in my MMA fights.  I adopted the "living FAPulously" as my mottos because I truly am living my best life with healthy organs only and mastering this journey.  Thank you for creating this platform for me to share about my genetic disorder that few know about or even understand.

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