welcome to oneFAPvoice

This annual Philadelphia based conference will include breakfast, lunch, and facilitated workshops ranging from disclosure to creative therapy through which attendees will: learn about national and local resources connect with other young adults who can relate to their unique perspective develop skills to help them manage cancer as a young adult.

Young Adult Cancer Connection provides a rare opportunity for young adults (18-39) and their caregivers to come together and work through the issues unique to our age group, discover emotional and clinical resources, and, ultimately know that we’re not alone in our cancer experience.

Your purchases help us meet our vision for a world free of colon cancer where education, early detection and treatment lead to survivorship for all. You're moving our mission forward! 100% of store proceeds fund our prevention and patient support programs.

Super Custom Stuff -- Get your red hot gear here. Scroll through for some tailor made fashion and decals for the colonless and survivors of colon cancer, FAP and desmoid tumors. Yup, the graphics are all Todd Spurrier originals. More goods and a better way for you to see and buy them coming soon.

Shop our Store to Help Fight Hereditary Colon Cancer - hoodies, temp tats, fitted t-shirts.

[Dancing Crown] Keep Calm And Fight Fap (familial Adenomatous Polyposis)

Welcome to Life's a Polyp online shop! All proceeds are donated to National Organization for Rare Disorders Familial Adenomatous Polyposis. Life's a Polyp Shop works to raise awareness and research funds for Familial Polyposis. Life's a Polyp Blog chronicles my personal journey with Familial Adenomatous Polyposis (FAP).

Fundraising for research of Familial Adenomatous Polyposis, a rare disease causing 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.

The mission of DESTINATION X RIDE (DXR) is to save lives by unleashing awareness on the masses about three related conditions impacting thousands of people, including me and my family: Colorectal Cancer, Familial Adenomatous Polyposis (FAP) and Desmoid Tumors.

Through education and personal assistance we serve families at risk of cancer due to hereditary colon cancer syndromes. We strive to ensure they receive preventative, life saving medical care. Did you know that with early diagnosis, cancer risk in these families can be reduced from nearly 100% down to 0%?! In 2016, we have very ambitious plans to raise awareness across the county! When YOU donate…we raise awareness…early diagnosis occurs…lives are saved!

Fight Colorectal Cancer envisions victory over colon and rectal cancers. We raise our voice to EMPOWER and ACTIVATE a community of patients, fighters and champions to push for better policies and to support research, education and awareness for all those touched by this disease.

The Ryan Lee Holland Cancer Foundation, Inc. was formed in May, 2011. The foundation works in Ryan's memory to help cancer patients in active treatment who are dealing with the financial hardships created due to their cancer diagnosis and treatment. Financial assistance is provided to patients in active treatment, living in Georgia or Michigan no matter the cancer diagnosis or age, who are experiencing economic hardship due to diagnosis and treatment.

John Nickels is in the process of updating details of the things we would like to do. He has also been able to confirm that our next Informal Chat Day will again be a free event.

At Macmillan, we know how a cancer diagnosis can affect everything. So we’re here to support you and help you take back some control in your life. From help with money worries and advice about work, to someone who’ll listen if you just want to talk, we’re here.

Angie my sister is age 52 diagnosed with Stage 4 colon cancer in April 19, 2014. We have a hereditary disease in our family called FAP or Familial Adenomatous Polyposis. Polyps develop early in life around the time of puberty and if left they can be deadly. Angie had a surgery earlier in life and things were good. She started having severe pain in her back and for about 12 months the doctor was treating her for sciatica testing her for celiac disease sending her to pain management for injections to the nerves of her back etc and all the while tumors were growing causing her this excruciating back pain that the doctors thought she was just looking for pain meds She lost 52 pounds in a 4 month time span and still no red flags to the doctors in the clinic where she had been treated for 19 years...Until she went to the ER at Saint Thomas Hospital in Nashville,Tn. In an hour and a half she was diagnosed.. Since that day she has had a partial illeostomy( cant complete it until she is healthy enough) and started aggressive chemotherapy. She must be driven every two weeks to treatment in Nashville tn. every two weeks to see her oncologist at Saint Thomas Hospital Dr Gregg Shephard(who is awesome by the way) Expensive yes and it is an all day affair every two weeks. She has been informed by her doctor she will remain on some type of chemo for life. Over the course of treatment to date she has had around a 65% reduction since she started. Inititally she had a massive tumor in the lowest part of her colon and a large section of her liver and a spot on her lung that to date had not positively been determned if it is a tumor also or not. So AWESOME on the 65% reduction!!!! Thats the good part. Angie also has two teenage girls Alaina 15 and Faith 14 at home and a college student Jesse age 19 As well as two more adult children Amanda 32( who is also effected by FAP and had over 28 surgeries/procedures over the last 7 or so years ) and Josh 28 and 1 granddaughter Lily age 11

This funding is for medical cost for a young woman -a mother of 3 who was miss diagnosed - her surgeries have been done at John Hopkins in Maryland By A great Dr & his Group - not all medical cost were covered & now more surgery is needed & can't be done there due to present insurance has denied here coverage out of state ! Any & all donations will go to John Hopkins & Bobbiesue Ariola's treatment ! She is presently being seen at St Joes in Syracuse NY - They are Not Equipped like John Hopkins in Maryland - She has a blockage with a laceration in her colon. Also infection due to this condition .This young mother needs to go back to her Dr 's at John Hopkins - please share & donate

Emma Dawn is 6 years old and will have surgery on June 1st she needs her colon and rectum removed . She has FAP This is a colon disease she inherited from her biological father. Emma has already had 5 colonoscopy. Her colon is full of polyps that constantly bleed, She has liver sonograms every 6 months and blood drawn every 3 months. She has been seeing a colon doctor since she was 1 and she will have to see a specialist her entire life. Emma needs your help! Emma will need all kinds of medical supplies when she comes home, she will need things insurance will not cover. It will be months before Emmas mother can work and Emma receives no financial help from her biological father.

Mickelluh has always shown signs of being sick in some sort of way so when Rachael, his mom, was diagnosed with Familial Adenomatous Polyposis (FAP) when he was 5 months old, she began worrying that he also had the same disease. Mickes parents tried for six years to get someone to listen to thier concerns that Micke may possibly also be inflicted with FAP, but NO ONE listened. They were told he was too young and thier concerns were irrelevant. It wasnt until they visited the UAB Children’s Hospital in Alabama that someone listened.

Hi, I'm Hannah. Bowel cancer still takes the life of nearly 1 in 2 people diagnosed. This must change, that’s why I'm a researcher for Bowel & Cancer Research. Please help fund equipment for my lab. The final year of my PhD is approaching and the kit I use will cost £4,200, that's about £81 per week. Can you help me this festive season and make a donation to my lab? Together we can save lives. Thank you. Many bowel cancers have mutations in the gene known as Adenomatous Polyposis Coli (APC). Mutations in this gene are very common, occurring in 80% of sporadic bowel cancer patients. APC is also responsible for an inherited form of bowe lcancer called Familial Adenomatous Polyposis, (FAP). When mutations in APC exist, other genes become vital for bowel cancer cells to thrive. My aim is to identify which genes these are, and pinpoint drugs that can curb cell survival. This will improve treatment for patients.

I've been dealing with major medical issues since I was diagnosed at age 12 with Gardner's Syndrome. An extremely rare genetic disease that to this day is not fully understood.

Todd has been fighting a battle all of his life. After undergoing over 15 surgeries, chemotherapy and radiation by the time he was 16 years old he was thankful to be done with his battle they thought! He had multiple surgeries to remove desmoid tumors from his back which they were then told was from aggressive fibromatosis.

Recently my family has been dealing with a difficult situation that we never would've anticipated. In April of this year, my mother (Tiffany Holland) was diagnosed with stage 3 colon cancer. Her colon cancer came as a result of a genetic disease called FAP. My mother was the first member of her family to be a carrier of FAP; this means there was no other family history of this genetic disease in her family.

Jennifer Rosenberg is a 36 year old single mom. Her sister has provided the history of Jennifer’s medical conditions. My sister has had a history of Gardner’s syndrome FAP which cause polyps and cyst and has been going to the Dr for this since she was a teenager. She underwent a major operation to remove her colon in 2003 they replaced it with what is called a J pouch (basically a fake colon inside her body. In May 2014, she was diagnosed with Invasive Adenocarcinoma colorectal cancer. We were devastated!! He said it was small and that he would try and go in and take it out and reconnect her as per her wishes. She didn't want him to remove everything. We asked about chemo and radiation or other test to see if there was any other cancer anywhere else and they said no. They said she was too small for chemo and it would destroy her pouch. And that there was no other test. She was also complaining of tailbone bone we asked if that could be cancer? They told us no! She had her surgery Oct 2014 to remove the cancer had an ileostomy for 3 months then had it reversed. We were told she was cancer free. And was ok! Feb 2015 rolls around and she is having problems with her tailbone again. After follow up scans the Dr. calls….THE REASON I CALLED YOU IN IS... you have cancer again. It's on your tailbone. So a pet scan was done which showed the cancer in her abdomen and on tailbone and lymph nodes.

My name is Marty O'Brien, and I was born with the genetic disorder Familial Adenomatous Polyposis, or FAP. I have been battling this disease since my diagnosis at Massachusetts General Hospital in 1995. I have an abdominal tumor, called a Desmoid tumor, which has been around unfortunately since 1998. My story sometimes feels too long to tell, but the long and short of it is that I suffer from an orphan disease, meaning it is very rare, and there is not much money abounding for research and treatment. My wife and I been told many times that I have been close to death. Too many for me, thanks!

Trying to raise donations no matter how little or big.Mekaylas been struggling with a illness shw inherited by her mum.For the past 8 yrs Ive gone thru 4 cancers caused from my FAP(Gardners syndrome)as well as contracting AML that had nothing to do with my Gardners that just was purely bad luck.Now I have 5 abdominal wall tumor and go weekly chemo for at Moffitt to try to see if this will shrink them since these types of tumors never fully dissappear.Im praying everyday and night for some sort of a miricale tamd that this chemo that only helps around 60% will help me.I began it on May 18th and in that short time have had such poor red and white counts as well as other areas not looking so good so because of that Ive had to miss weeks, get blood tranfusions,even get admitted into the hospital to control infectiond as well as not just my chronic pain but the bone pain my medicine causes. At this time my oncoligist says its slow acting and since Im a mom ,a wife,daughter as well as a friend and any helpthat can help our family im completely grateful for since this is non cureableAmy Crawford as well as Amy johnson for helping and all the hard working extra hours she has put into this. so far from all i see she has a bright future in fundraising and or charity work.Takes people with a big heart to be able to do this.if all of you even were to donate up to $10 a person/facebook friend that wouwe may even be able to get m seems to one way or another to be a struggle for usld be so incredable and help my husband and I out for a lil bit with monthly utilities as well as dr bills office co pays medicine that my disability insurance doesnt cover and to be able to purchase a teenager sized bed for my youngest,things we take for granted for the most part.thank all of you im really looking forward to seeing many as well s as meeting many of you xo

If I wanted to share all the things they do on paper, it would require writing a book as their legacy is long and celebrated in our small community. The Pilon Family has been struck with their own crisis. Their second oldest daughter Shauna, age 19, was diagnosed with FAP (Familial adenomatous polyposis) last year, a rare disorder that runs in families. Shauna has had her colon and her thyroid removed already. Suzanne and her other three birth children HAVE BEEN DIAGNOSED with FAP and have undergone scans to determine colon removal and other treatments.

Unfortunately my company didn't offer employer-sponsored medical insurance and believe it or not...a family of 7 living on a humble single income didn't qualify us for any governmental help (Medicaid).

The Fastuca family is raising money to help prevent bowel cancer. Many of us in the family have a genetic condition called FAP which has lead to bowel cancer in some family members. We are raising funds for the Macrae Foundation at The Royal Melbourne Hospital to help this trial along. The hope is that together, we can help prevent bowel cancer from developing in not only fellow FAP families, but future bowel cancer patients. Please help by contributing to the Fastuca Family Fundraising project and help with research into this disease.

Ostomy & IBD Apparel Great clothing and accessories to promote awareness and provide confidence and laughter for amazing people.

Daily Living - IBS, FAP and Food allergies

F.A.P.

F.A.P. bits & bobs

My son Jonathan (FAP) Colon cancer A genitic mutation of hundreds to thousands of polyps in the colon & rectum. FAP., Famial Adenomatous Polyposis

FAP/colon cancer fighters

Familial Adenomatous Polyposis (FAP)

FAP/Desmoid Tumors - awareness and support

My genetic mutation FAP Hereditary conditions

F.A.P

F.A.P.

About Familial Adenomatous Polyposis

Life's a Polyp Blog

Awareness- Awareness of Familial Adenomatous Polyposis, colon cancer, rare disease

Products- Products for Familial Polyposis, ostomy, etc

Ostomy

Support and Information Support resources for those with intestinal, colon, gi, ostomy, etc issues

Familial Adenomatous Polyposis

Familial Adenomatous Polyposis

F. A. P

Familial Adenomatous Polyposis FAP

Our FAP Story My son was diagnosed with Familial adenomatous polyposis In July 2014. This is our story.

Familial adenomatous polyposis ( FAP)

F.A.P. and me

Familial Adenomatous Polyposis

Familial Adenomatous Polyposis

Fee Cullen

An engineer on paper. An artist at heart. Celiac, FAP Previvor but positive & quirky - traits my Lakeland Terrier, Jax, seems to have inherited.

collection of photos

A blog about my health journey. A chance to connect with others, share, and help each other to live life to the fullest.

I'm Leah: a professional daydreamer walking on land, experimental artist, and creative writing major. One-step laparoscopic colectomy, j-pouch.

2 years ago I was diagnosed with F.A.P. (familial adenomatous polyposis). I had hundreds of pre-cancerous polyps throughout my large intestine, along with 3 tumors. The doctors were surprised because I have a rare health condition. 2 weeks later I was scheduled as a priority for a major (7hr) surgery. I was told it can turn into cancer any minute so I didn’t really have a choice. It was either a life or death type of risk. I was not ready at all, I cried everyday up til my surgery room. I had atleast 30 family members that showed up in the waiting room prior to my surgery, supporting me. Doctors warned me that my relationship might not work out because it’s too much to handle for my other half. They told me that three other young adults with my situation in the previous years didn’t last with their relationships.

This ride is all about photographing colorectal cancer(diagnosed under the age of 50), Familial Adenomatous Polyposis(FAP) and desmoid tumor survivors for the 500UNDER50BEFORE5O & FACEiT Projects. I will also be capturing the sights along the way. The ride makes it start from Harpers Ferry, WV (one of my favorite places in the east), and will follow the Appalachian Trail to it's northernmost point in Maine. From there I will ride up to Caribou, ME, where I will then turn my road show around and head south along the eastern coast. I'm planning to embark on the ride on Saturday, October 4th. The duration will be between two and three weeks.

General and Colorectal Surgery - Instituto de Investigaciones Médicas Alfredo Lanari - Universidad de Buenos Aires

Genetic Counselor at Cleveland Clinic

Hereditary cancer clinic at University hospital of Heraklion-General hospital "Venizelio"

Cancer Genetic Counselor

Genetic Counselor

Medical Geneticist and Internal Medicine

Genetic Counsellor

Cancer Genetic Counselor at Massachusetts General Hospital

Postdoc at Academic Medical Center

Director of Genetic Counseling Services at Sema4

Clinical Genetic Counselor at Intermountain Healthcare

Board Certified Genetic Counsellor

Laboratory Services Manager

Professor and Simons Chair of Medicine at Stony Brook University

Investigator II at Novartis

Founder & CEO at Clear Pharma

Scientific Officer, Pharmacist at pharmaSuisse - Schweizerischer Apothekerverband

Co-founder, Cancer Prevention Pharmaceuticals

Co-Founder and CEO, Thetis Pharmaceuticals LLC

Director, Payer Medical Affairs at Foundation Medicine Greater Salt Lake City Area

CEO S.L.A Pharma

Manager, Biomarker Assay Specialist, Translational Oncology at PfIzer

Board Member F.A.P. Foundation June 2012

Clinical Research Fellow & Honorary Clinical Assistant Imperial Cancer Research Fund 1993 – 1998 (5 years)Colorectal Cancer Unit, St Mark's Hospital Clinical and laboratory research into familial bowel cancer, in particular Familial Adenomatous Polyposis (and its attenuated variant) and Hereditary Non-Polyposis Colorectal Cancer (HNPCC as was; now called Lynch Syndrome). Clinical work with cancer families through the ICRF Family Cancer Clinic at St Mark's. Member of Council, International Society for Gastrointestinal Hereditary Tumours (InSiGHT)  

Clinical Psychologist

Pharmacologist

Team Leader, CMC, Cardiomyocyte Cell Manufacturing

Senior Manager, Medical Scientific Affairs Baltimore, Maryland Area

Research Associate Professor, Division of Genetic Epidemiology, Department of Medicine at University of Utah

Post-Doctoral Research Fellow at Dana-Farber Cancer Institute Boston, Massachusetts

Research Scientist

Postdoctoral Researcher

Genetic Counselor

Chief Executive & Scientific Officer

Department of Biology

Writer, graphics and living life with an amazing sense of humor!

Proud of my 2 inspiring kids that were diagnosed with F.A.P, a disease that leads to colon cancer etc. at an early age...they are true rock stars like MT!

I'm a 37 year old cancer warrior, I can't think of another word to describe me. I'm hope to one day become a public speaker to bring awareness to rare diseases

Laughter, Friendship, Snacks & Tequila are the secrets to surviving.

I have familial adenomatous polyposis, short bowel syndrome, and Chronic pain. Everyday is a new battle but I won't give up! Thru God all things are possible!

4 x stage 4 colon cancer survivor/fighter & FAP disease. dx @ 40. A walking miracle

We are a support group aim at provide support and information to anyone whose lives are or has been affected by Familial Adenomatous Polyposis (FAP) or similar

I fight cancer everyday! I hate you F.A.P.!!

A research chemist in my previous life, I am the founder and current President of the Familial Adenomatous Polyposis Foundation (@FAPFoundation)

COLON CANCER/FAP/DESMOID TUMORS My mission is to save lives by getting awareness on the masses about 3 diseases that affect many, including my family and me.

Do you suffer from F.A.P.? There's a clinical study currently enrolling volunteers in hospitals throughout the U.S., Canada and Europe. Click to find out more

Hoping to provide information on all things bowel; Familial Adenomatous Polyposis, Polyps, Bowel Screening, Bowel Cancer, Crohns & Support Groups

I'm a 5 x stage IV #coloncancer #survivor #warrior #USArmy #Ranger #vet

(FAP) Familial Adenomatous Polyposis: The Good, The Bad, and The Bloody. Health, Colon Cancer, Rare Disease Blog

#Geneticcounselor, #President & #CEO of My Gene Counsel. #digitalhealth #entrepreneur #genetics #womeninstem #GCChat #femalefounders Co-creator #GenCSM.

Nothing special to see here. Just a regular girl and her weird thoughts. Hi.

Tweets by @VickyChas3 on behalf of The Polyposis Registry UK - caring for famillies with or at risk of a Polyposis Syndrome (FAP, MAP, JPS, PJS, SPS, PTEN)

Whimsy the Blue Cancer Fairy

FAP hashtag for the community

FAP hashtag for the community

FAP hashtag for the community

FAP hashtag for the community

This page is dedicated to Darrell Henry, Jr. and his fight or "Sufferfest", for those of you that know him, with Familial Adenomatous Polyposis (FAP) and the stage 3 cancer that attacked his colon.

The mission of DESTINATION X RIDE (DXR) is to save lives by unleashing awareness on the masses about three related conditions impacting thousands of people, including me and my family: Colorectal Cancer, Familial Adenomatous Polyposis (FAP) and Desmoid Tumors by broadcasting the message as widely and as loudly as possible that early screenings can prevent much more serious stages of these diseases. It is my hope that as I ride across the country each year and meet with other patients and families they are inspired by DXR and can see that having your colon removed and/or diagnosis with these diseases is far from the end of the road but can be the launching place for expressing your passion and being of service.

This is a Facebook page for the youtube channel F.A.P.ulousTV which explores what it's like living with Familial Adenomatous Polyposis (F.A.P.). Feel free to leave video suggestions, tips, or questions!

As somebody with FAP, I know first hand as the rest of us how rare it is and how uninformed most people are about our condition, let's help raise awareness together! Like this page and share it with your friends online to build a strong page that can get attention! Let's do this together!

For people with FAP and Desmoids and also their family if you want to chat and ask questions and really to support each other.

Hopefully this page will be an interactive online support network connecting people to share information, advice and experiences on all things FAP. Follow relevant news stories, articles and medical research focusing on FAP, and if you see something of interest and want to share, post it on the wall. Feel free to discuss anything, ask questions, add local support groups in your area or just invite others to like this page to help spread awareness of FAP. We hope that we can create a community spirit to support each other in living with FAP.

Hi all, i was diagnosed with FAP at the age of 8, and i had a total colectomy with ileorectal anastomosis at the tender age of 12 (1984), and have since had duodenal polyps, the largest of them was around a golf ball size this was removed in 2008 via endoscopic way, and i am screened now even 12-18 months for duodenal polyps this year i had my first case of acute pancreatitis, what i believe has to be related to FAP and polyps i have around the ampulla of vater so with all of this i thought might be good to set this page up part blog and part community group and support group for other suffers of FAP

I'm Jenny and I was diagnosed with Familial Adenomatous Polyposis at age 8. FAP is a hereditary rare disease that causes the development of hundreds to thousands of polyps throughout the gastrointestinal tract. An individual with FAP is guaranteed to develop cancer at some point in their lifetime and may develop cancer anywhere in the GI tract as well as other parts of the body with FAP. This is my journey with FAP: recounting memories and experiences, coping with life changes, tackling new challenges, and doing my best to continue to survive. When I was a child, I didn't know anyone else with FAP outside of my family. I hope you'll join me and together we can fight this disease.

The reason for this page is to give a unfiltered look at my life living with F.A,P as a cancer survivor. I will post videos, photos, and, discuss my journey openly and honestly. I will not sugar coat the hardships, nor dramatize them, what I see, you will see, and I will do my best to put my emotions into words.

Facebook page specifically created for children, youth, and young adults to share their experiences, get to know others their age who have struggled with FAP, all in the effort to not feel alone but realize that there are many who are there in the same position.

FAP is a disease that affects mostly the gastrointestinal tract, referring to the stomach, small intestine and the large intestine, but can also invlove other parts of the body including the liver, thyroid and skull/brain to name a few. This was created so that anyone affected with FAP either directly or indirectly. Feel free to ask questions or share stories with others in the same situation.

Facebook "profile" page with many friends.

I want people who have FAP or who have undergone Ileostomy closure or reversal experience so that this can be a step of information to all the others who have doubts or wants to share their experience. This can be a guideline for their recovery.

FAMILIAL ADENOMATOUS POLYPOSIS aka...FAP and has also been called GARDNERS SYNDROME Is an Inherited Colorectal Cancer Syndrome that affects 1% of all colorectal cancer cases. Familial means it runs in families; Adenomatous means the type of polyps found in the colon and small intestine that can ( AND IN MOST CASES WILL ) turn into cancer; Polyposis means the condition of having polyps usually 100's to 1000's. It usually develops starting in the teens. A Genetic blood test will confirm this disease and the gene is on the long arm of Chromosome 5 and is also called the APC Gene. Everyone missing the APC gene will develop colorectal cancer from the colon polyps usually by he age of 40. A person MUST have the colon and sometimes the rectum removed to prevent colon cancer. The APC gene that causes FAP is present in all of the body's cell so other organs can also develop polyp growths.

F.A.P is a rare inherited bowel disease that causes the growth of multiple polyps (small lumps/growths) to form on the lining of the bowel. These growths are non cancerous to start with but have what is called a predisposition to cancer,so over time the polyps can turn cancerous. Regular checkups using an internal camera called a scope and surgery are vital in the prevention of cancer and a relatively "normal" life can be lead. I was diagnosed at the age of 16 and I have created this group for sufferers of this disease in the hope that together, we can build an online community that is there to support each other day to day. Emotional support and understanding I believe is crucial to coping with this disease and there is no better support than people who are in the same situation. I feel it is very important to educate people on this disease,not only for the suffers who have it now,but for families in the future because as I have rather painfully realized it can happen to anybody!

This is a support group for people living with FAP and Desmoid Tumors. This will be a place for yourself or family and friends. FAP (Familial Adenomatous Polyposis) is an inherited disorder characterized by cancer of the large intestine (colon) and rectum. People with the classic type of familial adenomatous polyposis may begin to develop multiple noncancerous (benign) growths (polyps) in the colon as early as their teenage years. Unless the colon is removed, these polyps will become malignant (cancerous). We share our experiences in hope to help others out in not feel alone in dealing with FAP and all it encompasses

This group is for anyone that has had their large intestines removed and is still going strong! Feel free to discuss anything Crohns, Ulcerlative Colitis, Familial Adenomatous Polyposis (FAP) J-Pouch or ostomy related....or anything else we might have in common. If you are lucky enough to still have all your guts but are just curious about "our kind" as a friend once put it, feel free to join or ask questions!

This group was created so that any Australian's affected with FAP (Familial Adenomatous Polyposis), either directly or indirectly, can come together in a supportive online forum to ask questions, or share stories with others in the same situation. We are hoping to eventually organise some 'chat days' as well, where we can come together in person to support each other.

A rare bowel disease . Here in Nova Scotia there is no support group for us that have it. This way on facebook , hopefully people that have it would like to join and help support others with it.

FAP is an inherited condition which mainly affects the large intestine (also known as the large bowel or colon and rectum). People with FAP develop many polyps (which are like small cherries on stalks) inside their large bowel. There are many different types of polyps but these particular polyps are called adenomas (the "adenomatous" in FAP). An adenoma can in time turn into a CANCER which is why it is so important to make sure anyone at risk of inheriting FAP is examined. FAP is a serious condition unless detected early when it can be treated. I have been a patient at St. Mark’s for more than 20 years. I have three children also with the condition.

This is the Wonderland Online's Forever Alone Party Squad of Cancer Server

Growing up knowing about FAP (familial Adenomatous Polyposis) is not easy! You are not alone out there! This is a support group for young adults and kids with FAP in their family, either someone close to you or yourself have it, we are here to help you!

The Hereditary Colon Cancer Foundation’s vision is to be a beacon of light - extending life expectancy, enhancing life quality, and instilling hope in those born with Hereditary Colon Cancer Syndromes.

Leanne Hammond My story; life isn't so bad living with a bag

On the 27th of February 2015 aged 19 I had my colonoscopy and endoscopy. To everyone's surprise, doctors discovered 100s of polyps in my large bowel and one polyp in my stomach which was very rare and there was no sign of bowel problems in my family previous to me. They removed 20 of these polyps during my colonoscopy to biopsy in the lab. I got the results back 8 weeks later when I found out the biopsies had come back abnormal, my world crashed down around me as I thought why me? No 19 year old should be faced with this. I was later transferred to another hospital to have a genetics test done, which then I was diagnosed with the condition FAP (Familial adenomatous polyposis) a genetic condition that develops into cancer if it's ignored, but it was not genetic in my family, I was the first to develop this condition.