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    efisher Apr 20 2018 11:28 am

    I don’t always have time to check in, or share, but am always glad this is such a caring resource to refer to...thanks for continuing to be in my corner.

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    fapvoicedemo Apr 19 2018 2:23 pm

    F.A.P. Surveillance Exams: What's involved?

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    john roberts Apr 19 2018 2:23 pm

    SCALEing F.A.P.: Impact of J-Pouch Surgeries on My Weight

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    Community Mgr. Apr 17 2018 3:02 pm

    Anyone catch FAP's mention in this insightful gem of a book?

    Invisible: How Young Women with Serious Health Issues Navigate Work, Relationships, and the Pressure to Seem Just Fine

    Has being young and/or a woman AND sick impacted you? This FAPer's medical experience may be one of the most harrowing ones I've heard however, I appreciate that her story and FAP are advancing the young adult cancer narrative.

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    Nicolekim Apr 13 2018 12:42 am

    Ok so has anyone here with FAP been diagnosed with POTS

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    Community Mgr. Apr 3 2018 1:28 pm

    Do you care for someone with FAP? There is still 1 opportunity left to share your experience with FAP and get $60 by completing this survey: https://www.fapvoice.com/rare-questionnaire/?invited_sID=OTIzMjQ1

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    Nicolekim Mar 28 2018 7:58 pm

    Well it has come time for my 15yo daughter to have her colon removed. My son had such are hard time and with the desmoids my nerves are shot

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    Community Mgr. Mar 27 2018 3:58 pm

    Increase knowledge about the impact of FAP (and the size of your wallet)! The first 15 FAPers and 5 caregivers who are eligible and complete the "Burden of FAP" survey will receive $60 as a thank you! The survey shouldn't take more than 45 minutes and your insight will help raise awareness about the overall FAP experience. (links below)

    Patient Survey: https://www.fapvoice.com/rare-questionnaire/?invited_sID=ODUxMzg0
    Caregiver Survey: https:/Read more

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    LifesaPolyp Mar 1 2018 6:58 pm

    Anyone have any particular websites/resources regarding Turcot Syndrome that they'd recommend?

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    LifesaPolyp Feb 28 2018 10:38 pm

    Happy Rare Disease Day!

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    Erin Coolican Dickman Feb 28 2018 3:05 pm

    Hi All!,

    Well we got back Lily's results back and she has been diagnosed with AFAP. I was happier about this than a classic FAP diagnosis however her codon 2005 is on the side of the chromosome that gives her a higher chance of desmoid's. She has already been diagnosed with a Pilomatrixoma (another genetic uncommon benign skin tumor that is rarely associated with FAP). We are meeting with a Pediatric GI at UF Health/Shands. She has several F…Read more

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    Community Mgr. Feb 27 2018 1:48 pm

    Rare Disease Day at NIH 2018 Caught up with a friend who is in med school. She eagerly wrote me when they learned about FAP in class and asked me a bunch of questions. Her inquiries quickly confirmed the limited scope of the disease imparted upon those of our future healthcare providers not specializing in GI. APC mutation, Polyps, Colon Cancer, and an allusion to Gardner's Syndrome. There was even some misinformation communicated about the jpou…Read more

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    john roberts Feb 23 2018 4:55 pm

    Bon Voyage: Traveling with a J-Pouch Part 2

    https://www.youtube.com/watch?v=x-9gR_LK3Cg

     

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    kerryleelloyd Jan 29 2018 7:39 pm

    Where to begin? My husband is 34 years old and was experiencing significant stomach discomfort . after an upper and lower scope it was clear that his stomach was covered in polyps (but the Dr called it "gastric folds") and 10 benign polyps were removed from his colon. We were sent to another hospital and the the Dr there did another type of biopsy. He explained that there are hundreds of polyps covering the lining of his stomach and two in his …Read more

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    Community Mgr. Jan 22 2018 4:41 pm

    Some "gut-busting" humor for the beginning of your week.

    Any thoughts on colon/cancer humor? Personally, I've come to appreciate the inside cancer jokes shared between fellow cancer-ers and the awkwardness they can yield when thrown around in the general public.

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    Teresa Stewart Jan 14 2018 10:45 pm

    who here deals with pain all day everyday? I am on pain killers but don't want to be I want an actual solution but doctors can't give one to me. I go to the bathroom A LOT because I get cramping pain and only way to make it go away is to go to the bathroom. what do you guys deal with and how do you deal?

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    Pennie Bickerstaff Jan 7 2018 3:05 am

    Is anyone in our group taking sulendac for polyp growth?

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    Erin Coolican Dickman Jan 2 2018 6:45 pm

    Hi Everyone, my name is Erin and my daughter Lily is about to undergo genetic testing for FAP. We found out when she was about 3 that her biological father has FAP. He found out at 45. It was a surprise to him because he was adopted and it was not included in his family history. Lily is going to be 10 in January. This past year she had a cyst removed from her chest that came back from biopsy as an epidermoid cyst. She has quite a few others that …Read more

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    Community Mgr. Jan 2 2018 2:01 pm

    Happy New Year everyone! Do you have any FAP or non-FAP-related goals or plans for the coming year? I'm thinking about striving for better hydration management and adding to the passport stamps garnered by my jpouch (and hoping for improved health for myself and my fellow FAPers).

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    Ashleyshows Dec 23 2017 6:15 pm

    Hey you guys, Callie is finally home!! She is having amazing output. I have a few questions if you have any input would be amazing!!!!!
    1st. She has a little hole next to her stoma should I be worried about it? We’ve called the dr he said it sometimes happens just wondering if anyone has had experience with that?
    2nd. She is just not feeling it! Like just down in the dumps. We’ve baked cookies talked about presents and santa. And she is jus…Read more

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