Warning Signs of FAP – Familial Adenomatous Polyposis

I never knew the little things were all leading up to me having FAP. Perhaps if I had a colonoscopy 10 years ago I would have been able to have the IRA or save my rectum or hell even took the meds that slow polyp growth down. So these are things I had as a kid and now as an adult (eye thing is new). So if your children have any of this, get them tested, it is very common to not get FAP from a parent, like me. I am the first in the family.

As a kid I had extra teeth grow in, I had 2 extra canines grow in, overlapping my teeth, stuck out like vampire fangs lol. When the bottom teeth were pulled by a dentist who suggested it before giving me braces the top ones fell down in place. Extra teeth is a sign of FAP.

On my tailbone area around age 6 my mom says, I say 12 i noticed it I had a very large Lipoma form, that was later removed by liposuction. That is related to FAP.

That last eye exam I had for glasses I wear for computer use due to a small astigmatism. When they dilated my eyes for a retina check I was told I had scar tissue behind my retina. “Scar tissue I thought? Never heard that before or maybe nobody saw it”. Anyway, I was told maybe due to an infection. Ugh… fire anyone that says that! Usually they see freckles behind the retina, that is congenital hypertrophy of the retinal pigment epithelium CHRPE.

I formed a desmoid tumor after I had a tumy tuck revision in May of 2011 that formed. Weird I thought, WTF is a Desmoid tumor. Benign tissue basically. We tend to form these cyst like tumors in places we have been cut. So if you ever had one grow, chances are you have FAP.

Get a colonoscopy to determine if you have Familial Adenomatous Polyposis. They do them as early as 3 these days.


2 thoughts on “Warning Signs of FAP – Familial Adenomatous Polyposis

  1. Hello Vanessa,

    I left a comment on another one of your posts earlier. I just noticed in this post that you have desmoid tumors as well. I have the FAP/desmoid combo as well. Here is a link to a desmoid tumor organization where you can get more information on them. The name of the organization is the Desmoid Tumor Research Foundation. Desmoids are so rare and not much is really known about them. Many oncologists don’t even know much about them. I have had oncologists look at me with blank expressions because they really don’t know much about them. Is super-frustrating. Anyway, Just thought I’d pass along the link to their website. All the best to you and if you ever want to talk about these diseases we share don’t hesitate to send me an email.



  2. I had one desmoid but had it removed by a plastic surgeon and never came back and no more. I might not get anymore since I only had one and over 10-12 surgeries (knock on wood)

    The place that does the most research on desmoids is in Tampa actually. Very funny since I just moved from there and I am returning to St Petersubrg/Tampa to have surgery for the BCIR.

    This disease is frustrating! I am lucky my geneticist and group of doctors specialize in FAP and LYNCH. Never knew Dallas would be good for anything 😉

    You can email me if you want to chat vanessavy @ gmail . com


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