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European Hereditary Tumour Group 3rd Meeting 2018
Dates: 23-25 September 2018 (Sunday to Tuesday)
Venue: Radisson Blu Hotel, Nice, France
On behalf of the European Hereditary Tumour Group (EHTG), we are delighted to invite you to the 2018 EHTG meeting being held in charming Nice along the Côte d’Azur. The meeting is mostly interdisciplinary and offers the unique setting of attracting scientists and clinicians from many different disciplin
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Understanding Health Insurance
Health insurance is a way to pay for healthcare. If the policyholder (the patient, patient’s parents, or a caregiver) pays the premiums, then the insurance company will cover many of the costs associated with your health needs.
As a member of the rare disease community—and even if you are not—it is important to understand health insurance even though it can be a complicated and challenging subject.
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Study identifies enhanced impact of treatment for hereditary cancer patients
People with an inherited syndrome called familial adenomatous polyposis (FAP) have a 100% lifetime risk of developing colorectal cancer if they do not seek appropriate medical care. Recent findings published by researchers at Huntsman Cancer Institute at the University of Utah identified a promising prevention treatment for patients with FAP. A new study takes these findi
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Hi there! I’m Amy and I am a web designer who lives in England with my husband and two cats. I'm currently battling advanced bowel cancer.
I feel like I’ve coped quite well so far. My side effects have been manageable. I’ve been a bit bummed about my hair thinning but I am thankful that I consistently feel pretty good (ask me again in two months, though). I haven’t really needed my nausea pills!
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I am having 1st of two stage surgery and will have a temporary ostomy. I would like to get some input as to what ostomy bag system people prefer, one or two piece. And what brand. I am 5'3 160 lb 48 year old woman. I had most of my colon removed in1987 due to familial polyposis. Due to size, speed of growth and that the polyps are transitioning I am having to remove remainder of colon and the lining of the rectum. I would greatly appreciate…Read more
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Community Mgr.
HI cjpjrr3 - That's a good question. It seems like finding the right ostomy model and brand is such a personal thing. I had a temporary ostomy between my proctocolectomy and reversal surgery but didn't have time to try too many different ostomies. I was definitely eager to switch from the hospital's clear ones though. Some people love the two piece (I've heard they are preferred by athletes) but I stuck with the one pieces by Convatec. You c…Read more
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Community Mgr.
Also, here are some ostomy tips and tricks. The last tip talks about free samples and lists different ostomy brand links. https://www.fapvoice.com/rcuratenew/ostomy-tips-tricks/
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Last year at this time, it was FAP Awareness Week in the state of Michigan and although it may not be official, we can still spend this week (and many others) spreading knowledge about this rare genetic disease that impacts us! Stay rare aware folks and happy faux FAP awareness week!
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Hello everyone
I have thought I had thyroid problems for quite a while, my thyroid appeared to show early nodules a year ago during my annual scan. More recently my hair started to come out, my eyes have been giving me trouble especially at night. They are really dry and gritty and now I think I’m going cross eyed in one eye (no laughing please!). Now my tongue is really swollen and sore, it literally feels like it is too big for my mouth. Than…Read more+ care 4+ hugs0+ thanks2+ prayers0+ care 4+ hugs0+ thanks2+ prayers0-
Community Mgr.
Hi DaniCon - Sorry to hear about your pesky thyroid but I'm glad to hear you'll be seeing an endocrinologist who hopefully can help you get to the bottom of these complications. It sounds like your intuition is right as some of these manifestations can be associated with hypothyroidism (a potential extracolonic complication of FAP: https://www.fapvoice.com/rcuratenew/thyroid-cancer-and-benign-thyroid-disease-in-patients-with-familial-adenomatou…Read more
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Aussie45
Be sure to get your eyes tested annually and report any differences asap
Thyroid is an annual check also and must be taken seriously with FAP
Chance you have a growth or other issue developing-
Community Mgr.
Thanks Aussie45 for this input. You're right that the thyroid as well as eyes (especially if someone has CHRPEs) need to be monitored in those with FAP. Unfortunately, a lot of FAPers still need to advocate for and know the recommended extracolonic screening guidelines such as annual thyroid ultrasounds but hopefully oneFAPvoice and its informed members (plus the knowledge that time and additional research brings) are starting to encourage healt…Read more
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DaniCon
Thanks everyone
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I was recently told that both my 18yr old son & 17 yr old daughter have polyps in their colon & would face having then removed. Their doctor has informed their great grandmother (she went to the visit bc I was hospitalized at the time) 5hat they would be able to get this "new" procedure which would replace their colons with artificial ones. Has anyone ever heard of this? We dont have another appt with this doctor bc we were referred out…Read more
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Community Mgr.
Hi Renee - Sorry to hear about your recent hospitalization and that you're starting to have to think about surgery for your children. Although this isn't exactly a new surgery, it's possible this doctor was talking about a restorative proctocolectomy which removes the colon and most of the rectum and creates an internal reservoir/pouch from a portion of the small intestine. It may be worth asking this doctor if he was referring to a restorativ…Read more
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Renee
I wish it was the Jpouch that the doctor was speaking of, but unfortunately, he was speaking of relaxing the colon with an artifical colon. I had never heard of this until their great grandmother told me while in the hospital. Unfortunately, I've been fighting to get their genetic testing done, bc the doctor we was seeing didn't findit medically necessary & the next doctor wasn't capable of doing it or recommending a place to have it done.…Read more
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Aussie45
Anything is possible! Please post all you find as this is a big deal for so many. I have a friend who had his aorta replaced with one from a pig and it is working beautifully so far (5yrs).
Replacing the small intestine would be a totally different matter. Eventually FAP eats away at the stomach and upper portions of the small intestine ... mine went into the pancreas and that was sectioned out and works fine....I was very very fortunate to ha…Read more-
Renee
Mine has went into my pancreas, also. I suffer from Chronic pancreatitis. It has kept me in & out of the hospital for the last couple of months. My bowel duct shut down on me about a month ago & I ended up having to have a PICC line with a feeding tube ran. That was a bit scary. I ended up being in the hospital for 24 days. The doctors are keeping a close eye on my intestines & bowel. My doctor specializes in patients with FAP. I'm t…Read more
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Aussie45
Mine was discovered when I was much older.. I had only one surgery and the surgeon started with a Whipple to remove the affected portion of the pancreas and after the gall bladder was removed and almost all of the stomach, he sewed the pancreas, stomach and what remained of the small intestine (first three feet were gone) so he sewed the units together then proceeded down and removed some of the lower small intestine and all of the large intesti…Read more
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CDuncavage
I have not heard of being able to replace colons, yet they are able to remove the colon and pull down the small bowels to create a "J-Pouch". That is what I have. About the 50/50 chance regarding F.A.P., there are families where it is 100% and my family is one of those. If the parent has F.A.P. all of the children will have it. If the parent does not have F.A.P., then none of the children will have it. 90% of my family had the genetic diso…Read more
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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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Community Mgr.
Thanks for the kind words efisher ! We're glad you find the platform helpful and know that we're absolutely in your corner.
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fapvoicedemo
john roberts check out this video. very informative...
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Anyone catch FAP's mention in this insightful gem of a book?
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.
Already appearing on must-read lists for Bitch, PopSugar, BookRiot, and Autostraddle, this is an exploration of women navigating serious health issues at an age where they're expected to be healthy, dating, having careers and children. Michele Lent Hirsch knew she couldn't be the only woman who's faced serious health
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Ok so has anyone here with FAP been diagnosed with POTS
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Community Mgr.
Hi Nicolekim - At the present time, I don't think POTS is recognized as being linked to FAP. Personally, I have not received a POTS diagnosis in addition to FAP. However, this absolutely does not mean that is not possible to have both diagnoses. In fact, we did some digging just to see if this comorbidity has been examined in the past and this poster presentation came up: https://www.fapvoice.com/rcuratenew/postural-tachycardia-syndrome-pots-pat…Read more
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Sarah Stoyer
I do happen to have POTS. No fun 👎
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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
get connected to the best sources of Familial Adenomatous Polyposis information and support online, all for free.+ care 0+ hugs0+ thanks0+ prayers0+ care 0+ hugs0+ thanks0+ prayers0-
Sarah Stoyer
No matter what I do, it tells me this survey is closed....
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Community Mgr.
Hi Sarah Stoyer - The above survey link actually isn't available to people with FAP. We did however just re-open our "Burden of FAP" survey geared towards patients for an additional response so if you hurry, you may be able to still participate before it closes. https://www.fapvoice.com/rare-questionnaire/?invited_sID=ODUxMzg0
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Community Mgr.
Way to be speedy FAP advocates! The Burden of FAP surveys for both FAPers and people who care for someone with FAP are now closed. Thank you for sharing your voice and if you didn't get to participate, don't worry, we will keep you up to date about future survey opportunities (and don't forget about all of the rarePolls)!
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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.
Hi Nicolekim - I am so sorry to hear about your daughter needing her colon removed right now and your son's desmoid tumor challenges. It is completely understandable that you're feeling overwhelmed by this especially given your son's experience. Is your daughter's polyposis too advanced to continue monitor with frequent colonoscopies? With your son having a desmoid history, this risk is definitely something to bring to the attention of your d…Read more
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debs11
I wish your daughter well.xx
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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+ care 0+ hugs0+ thanks0+ prayers0 -
Anyone have any particular websites/resources regarding Turcot Syndrome that they'd recommend?
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Community Mgr.
If you make headway on this diagnosis, please let me know! I must confess, I never quite know how to talk about it or where it stands as a different disease altogether or a subtype. My understanding is that it's FAP's colon cancer risk but the main differentiator is the type of CNS risk (medulloblastoma) vs potentially glioblastoma in FAP. Here is an article that argues both Gardner's and Turcot Syndrome are outdated terms given the growing re…Read more
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LifesaPolyp
Thanks! I would agree as well regarding these being outdated terms. An individual had messaged me inquiring for resources. I found NORD has a rare disease report specifically on Turcot and dovemed.com as well. But with it being engulfed by FAP in a general matter, there wasn't a lot of additional information I found. It seems to be discussed more so in passing.
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Community Mgr.
Agreed. I wonder how medical students learn about it, as a separate disease or a sub-type of FAP (or not at all). Let me know if you find anything elucidating about it.
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Happy Rare Disease Day!
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Community Mgr.
Right back at you! Thanks for all the knowledge you spread about FAP this past month (and every day)!
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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.
Hi Erin- Thanks for throwing yourself into the oneFAPvoice mix! Your involvement and insight is greatly welcomed at any and all times! Although it can feel odd saying I'm glad Lily has AFAP instead of regular FAP, you're right, AFAP comes with it's own unique issues. AFAP unfortunately can still be associated with manifestations of FAP beyond the colon. I am so impressed that you and your daughter's team talked about her specific mutation sit…Read more
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