Site-Wide Activity | oneFAPvoice
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    Community Mgr. Oct 17 2017 3:08 pm

    Thank you oneFAPvoicers for revealing the power of the rare community at NORD’s Patient Summit. Check out the poster you powered https://www.fapvoice.com/rcuratenew/revealing-power-rare-disease-community-state-art-collaborative-trustworthy-digital-education-software/

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    AnnGam Oct 11 2017 1:14 am

    Just wondering if anyone has had issues with their pancreas? I had an ultrasound and they saw a cyst, so now I'm scheduled to have an MRI to get a better picture.

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    Robert Oct 5 2017 7:58 am

    Efficacy of pancreatic enzyme replacement therapy in chronic pancreatitis: systematic review and meta-analysis

    Objective The benefits of pancreatic enzyme replacement therapy (PERT) in chronic pancreatitis (CP) are inadequately defined. We have undertaken a systematic review and meta-analysis of randomised controlled trials of PERT to determine the efficacy of PERT in exocrine pancreatic insufficiency (EPI) from CP.

    Design Major databases w…Read more

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    LifesaPolyp Oct 3 2017 8:35 pm

    I'm excited to have launched Life's a Polyp on Youtube as well and would love to hear your ideas for future videos.

    https://www.youtube.com/channel/UCqXW6N2IARpKYgXE-xnWeOg

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    Community Mgr. Sep 29 2017 1:23 pm

    Anyone attending the upcoming "Voices of De Novo" HCC Takes Guts webinar on Thursday at 1PM EST? I'll be joining a panel of super cool de novo FAPers (all of whom presented with FAP differently) so I'm a bit biased but, I'm definitely pretty excited for it!

    Although geared towards healthcare professionals (credit is available), this one will likely be pretty patient/caregiver/advocate focused. There have been some pretty great FAP-centric w…Read more

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    Community Mgr. Sep 27 2017 12:06 pm

    Practical guide to exocrine pancreatic insufficiency – Breaking the myths

    BACKGROUND:

    Exocrine pancreatic insufficiency (EPI) is characterized by a deficiency of exocrine pancreatic enzymes, resulting in malabsorption. Numerous conditions account for the etiology of EPI, with the most common being diseases of the pancreatic parenchyma including chronic pancreatitis, cystic fibrosis, and a history of extensive necrotizing acute pancreatitis. T

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    Community Mgr. Sep 19 2017 1:58 pm

    Has anyone been to Global Genes' Patient Advocacy Summit? I was a first timer this year and loved being surrounded by fellow rarities (and spreading the word about FAP). Also, as a fierce traveler/chronic illionaire, it was pretty cool to chill with Kevan of We Carry Kevan who I had just read about a few weeks ago (pictured below-just noticing now I was photobombed by the director...love it).

    Today is the 6 year "anniversary" of my proctocole…Read more

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    donna rae Aug 29 2017 5:59 pm

    Hi, all! I'm post-colectomy (09), post- small bowel resections (March), and still growing and having removed polyps in the stomach, duodenum, and small intestine. I have malabsorption (duh), nausea, gas and bloating, and have floating, greasy stool despite eating a very healthy, lower-fat, whole-foods, mostly plant-based diet. My (AMAZING) local GI wants to start me on prescription pancreatic enzymes to address some of my symptoms. Anyone ta…Read more

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    vtnancyp Aug 29 2017 3:20 pm

    If you are using EPA for chemoprevention, would you mind sharing what brand (available in US) and how much you use? Any side-effects? Thanks in advance.

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    Kevin mark Aug 18 2017 4:02 am

    Colorectal Cancer: No Longer the Issue in Familial Adenomatous Polyposis?

    Familial adenomatous polyposis (FAP) is a dominantly inherited colorectal cancer (CRC) syndrome with an untreated lifetime prevalence of CRC close to 100% and extracolonic manifestations (ECM) of increasing clinical significance. This study examined the effect of systematic callup and prophylactic colectomy on FAP survival. Patients diagnosed, treated and followed-up at our

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    rareLife demo Aug 10 2017 3:51 pm

    bambakurru

    Fee Cullen

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    Ashleyshows Aug 9 2017 9:43 pm

    So we just left the surgerons office. I am thinking we will be having her surgery in December while she is on Christmas break because my step daughter who is 8 has FAP just started school and the surgeron said it could take 3-4 weeks for her to recover. My question is if you have had a jpouch how long did it take for you to just recover from surgery? He also said a lot of people get that infection afterwards I forget what he called it. But have a…Read more

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    Ashleyshows Aug 8 2017 4:39 pm

    Hey there everyone! We just found out my step daughter who is 8 has FAP which we knew my step daughters would have it because their mother had it. She sadly passed away from complications from a surgery. Callie (my 8 yr old) had her first colonoscopy and endoscopy on July 21st. Found 500-1000 polyps in her large intestine and some in her stomach. None were precancerous or cancerous so that's good. But we met with a surgeon tomorrow and they are …Read more

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    john roberts Aug 2 2017 5:56 pm

    Sulindac/Erlotinib Combo Tested in Patients with Familial Adenomatous Polyposis

    A lower duodenal polyp burden was seen after 6 months of treatment with sulindac and erlotinib vs. placebo among patients with familial adenomatous polyposis (FAP), a study published in JAMA reports.

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    john roberts Aug 2 2017 5:48 pm

    Tucson drug startup launches gastric-cancer trial

    Tucson-based drug startup Cancer Prevention Pharmaceuticals Inc. has announced the launch of a Phase 2 clinical trial at Vanderbilt University Medical Center to test the company’s flagship drug candidate for preventing gastric cancer.

    The drug, CPP-1X, will be studied in patients with precancerous gastric lesions who are at high risk for gastric cancer, the company said Monday.

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    john roberts Aug 2 2017 5:48 pm

    Tucson drug startup launches gastric-cancer trial

    Tucson-based drug startup Cancer Prevention Pharmaceuticals Inc. has announced the launch of a Phase 2 clinical trial at Vanderbilt University Medical Center to test the company’s flagship drug candidate for preventing gastric cancer.

    The drug, CPP-1X, will be studied in patients with precancerous gastric lesions who are at high risk for gastric cancer, the company said Monday.

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    john roberts Aug 2 2017 5:48 pm

    beating bowel cancer

    Most people who develop bowel cancer have no family history of bowel cancer. However, for around 25% of all bowel cancer cases diagnosed in the UK there is a family history. Generally speaking, the more members of the family affected by bowel cancer, and the younger they were at diagnosis, the greater the chance of a family link.

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    john roberts Aug 2 2017 5:47 pm

    Atlanta Gastroenterology Associates

    AGA, established in 1976, is the largest gastroenterology practice in the southeast dedicated to the evaluation and treatment of both digestive and liver diseases. AGA has a long, successful track record in performing colonoscopies. Over time, colonoscopies have actually become a routine procedure and most are now performed at AGA's outpatient endoscopy centers. In addition, AGA works with its patients' primary

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    john roberts Aug 2 2017 5:47 pm

    Atlanta Gastroenterology Associates

    AGA, established in 1976, is the largest gastroenterology practice in the southeast dedicated to the evaluation and treatment of both digestive and liver diseases. AGA has a long, successful track record in performing colonoscopies. Over time, colonoscopies have actually become a routine procedure and most are now performed at AGA's outpatient endoscopy centers. In addition, AGA works with its patients' primary

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    rareLife demo Aug 2 2017 10:32 am

    5 Things to Know When You’re Dating a Person With an Ostomy

    Maybe we told you about this months ago and you’ve been mulling the thought of going further over; maybe we told you over cocktails on our first date. Maybe we met on a disability dating website; maybe we hunted you down on something less savory.

    But here’s the situation — your significant other might not have one of their urinary or digestive organs.

    Here’s some know-how

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