welcome to oneFAPvoice

We got this... This has been the mantra of Dan's friends and family as they help him navigates a difficult medical rodeo ride.  This blog contains entries from Dan as well as his friends and family.

I am a Self Discovery Coach and Solution Focused Hypnotherapist based in Llandudno, a seaside town in North Wales in the UK. I am also a cancer survivor and in December 2007 at 30 years old I was diagnosed with a rare type of Bowel Cancer. I had just finished university and started my dream job as a Dental Hygienist and then my whole life was turned upside down. Without life changing surgery I was given just 4 years to live, obviously the decision to have surgery was a no brainer. It wasn’t long after losing mum that I decided that I wanted to do something with all the grief and heartache that was building up inside me. I began to realise that I could use my own experience of cancer both surviving it and losing my beautiful mum to it and turn everything that I was feeling into something positive to help and guide other survivors of cancer, life changing illnesses and events.

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.

Hello everybody! So obviously, my question has to do with FAP and pregnancy. Bit of some background about me--I'm 29 was diagnosed with FAP when I was 11, had surgery when I was 14 and with the exception of two not-so-great check-ups, I haven't had any problems or difficulties. I get checked up every year and whatever polyps are found in my J-pouch and duodenum, are removed. Also, I take Sulindac daily and have done so for several years now.

At the age of 51, Daniel Shockley received a life-changing diagnosis after having his first colonoscopy: he had Attenuated Familial Adenomatous Polyposis, or AFAP. As an advocate in Hawaii for the Colon Cancer Alliance (CCA) and Fight Colorectal Cancer organizations I requested the Hawaii Governor and Mayor of Honolulu to proclaim March – National Colorectal Cancer Awareness in Hawaii 2014. The Governor and Mayor honored this request marking the first time Hawaii has had such a proclamation.

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, which is why preventative treatment is crucial.

Marriage is already a complicated and often tense subject. Add into that the stresses of caring for a child with a life-threatening illness. This week for our community question, we asked how parents have made it through these circumstances with or without divorce and their advice to others.

I’ve been thinking about starting a blog for a while, but have always been shy to put myself out there online. Since finding out about all these fun rare diseases, I’ve had a lot of thoughts – good, bad, random – go through my head and I always find that writing it down really helps. I didn’t realise it would be so hard to come up with a name for the blog, I work in marketing so also had to be careful not to go too cheesy. I realise that what I chose, ‘shrinking the silence’ does probably need a bit of explaining. Many rare diseases are not widely talked about or known about, yet there are lots of people who live with them every day. I’ve found that at times because you don’t hear a lot, it can be isolating and there is a lot of silence on information and finding common experiences. So by sharing more, I hope to shrink the silence and have more stories shared and found online….shrinking is also in relation to my hope for my desmoid tumour to continue to shrink!

I’m a 28 year old, living with two very rare diseases, Familial Adenomatous Polyposis (FAP), and more recently an abdominal desmoid tumour (linked to my FAP). Since diagnosis I’ve found that there is limited information out there on rare disease, and it can feel isolating, silent and scary. I hope to share my experience and give hope that life can go on amidst all the uncertainty, even though some days are hard! I’ve now had all of my surgery to remove my large bowel, and cope surprisingly well without one! Instead I have a j-pouch (a surgically constructed internal reservoir made out of my small bowel).

Hello and welcome to my blog! My name is Hannah and at some point this year I will be having my large intestine removed and a stoma fitted! To say this is a shock would be an understatement! I have a rare condition, which is hereditary called FAP, HMPS, Gardeners syndrome (all of the above). I will go into more detail of what this is to hopefully raise awareness later. My main aim is to show people that it’s ok, I stay upbeat by talking to people and not bottling up my feelings, after all I will need every bit of support I can get! I will be blogging my journey from life before a stoma and life during and after surgery.

I’m a 31 year old female who was diagnosed with the genetic condition Familial Adenomatous Polyposis at the age of 28. Initially I thought that this condition was an easily enough condition to live with, however as time has passed I have come to realise that this condition is far from simple and straightforward, and in fact for me living with this condition has been life changing. I’ve always spoke openly and honestly about the impact of FAP on my life, and regularly posted on Facebook about the struggles and mishaps that Familial Adenomatous Polyposis causes me. A couple of years ago Family & friends suggested that I start writing a blog, to document my journey. Hope you enjoy reading my blog.

I am a scientist by profession and an explorer by passion. Outdoor activities used to be my way of relaxing, but then I was diagnosed with a desmoid tumor (nicknamed ‘Parmanu’) in early 2016. Since then, there has been a lot of physical and emotional turmoil before I reached the current state of peaceful co-existence with Parmanu. She is still growing and aggressive but I motivate her to enjoy this beautiful life and see the fascinating world with me. On this website, I plan to share stories about the various little adventures Parmanu and I have done together.

“You don’t have anything wrong with you. You have no issue walking,” he said with disdain for what I shared with him as I tried to empathize. My word alone that I have a chronic illness wasn’t enough for another person with chronic illness, too. Mine just happens to be invisible.

Hi there and welcome to Good Bye Colon.  A blog about a young man (me) saying good bye to his colon so he can remove his highest risk of death (colon cancer) and take a big step towards leading a long happy and healthy life.

I've seen some stuff, I've done some stuff, and I've been through some stuff. What a wild ride! I love my life, my kids, my husband, and my amazing friends. I'm thankful for everything I've learned and the people I have found.

Situated in Edinburgh, Kathleen is the founder and writer of this tiny space on the internet. Stemming from her lifestyle blog, KA5THLEEN, Kathleen wanted a place where she can share the parts of her life, which otherwise would stay hidden. Living a life with... is a personal blog that follows the journey of Scottish blogger Kathleen as she opens up about some of the issues she faces that others don't see in hopes to help and inspire someone else out there who may be going through the same.

Gardner Syndrome (GS) is a rare disease. It is a subtype (and severe form) of familial adenomatous polyposis (FAP). GS is an autosomal dominant disease characterized by Gastro Intestinal polyps, multiple osteomas, and skin and soft tissue tumors, specifically, epidermoid cysts, desmoid tumors, and other benign tumors. Polyps have a 100% risk of undergoing malignant transformation. These are a lot of big words that basically mean your body has genes that are going to mutate, and these genes are going to try to kill you, like the Joker in the original Batman comics. Despite how hard you fight against the Joker he never seems to actually die.

Yeah, that's why I'm Tina. I'm 40 ... though I don't feel a day older than 25! I live in a big house with my partner Morten. Two own children, Angelica, born 93 and Christoffer, born 94. I have some bonus children, as well as bonus bonus children, Rebecca, 91'a and Julia, 92'a. Then we have Nore, he was born 00 and his half-sister Judith, Morten's bonus child who was born 95. I work as a nurse at Bäcklidens Äldreboende in Vinninga.

I recently saw a 35-year-old man with a family history of familial adenomatous polyposis. A 39-year-old brother recently died from metastatic colon cancer. His mother and sister were also afflicted and have had colectomies. The patient himself has not had any colon polyps identified on colonoscopy. He has a multinodular goiter with several subcentimeter nodules. The largest nodule was benign on fine needle aspiration. His history is further complicated by the fact that he had lymphoma in his teens for which he received head and neck irradiation.

Those who have the highest lifetime risk of colon cancer are in the hereditary subgroup. Depending on the particular genetic syndrome, including Lynch, FAP, MAP, Peutz-Jegher’s and others, the chances of getting colon cancer may be 30-100%. If you have a family history, talk to your doctor! - See more at: http://ccalliance.org/blog/are-you-at-high-risk-for-colon-cancer/#sthash.5ttoYRJT.dpuf

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 issues at a young age, as well as the resulting effects on her career, her relationships, and her sense of self. What she found while researching Invisible was a surprisingly large and overlooked population with important stories to tell. Miriam's doctor didn't believe she had breast cancer; she did. Sophie navigates being the only black scientist in her lab while studying the very disease, HIV, that she hides from her coworkers. For Victoria, coming out as a transgender woman was less difficult than coming out as bipolar. And because of expectations about gender and age, young women with health issues must often deal with bias in their careers and personal lives. Not only do they feel pressured to seem perfect and youthful, they also find themselves amid labyrinthine obstacles in a culture that has one narrow idea of womanhood. Lent Hirsch weaves her own harrowing experiences together with stories from other women, perspectives from sociologists on structural inequality, and insights from neuroscientists on misogyny in health research. She shows how health issues and disabilities amplify what women in general already confront: warped beauty standards, workplace sexism, worries about romantic partners, and mistrust of their own bodies. By shining a light on this hidden demographic, Lent Hirsch explores the challenges that all women face.

Ostomy Life

Familial Adenomatous Polyposis, or FAP, accounts for roughly 1 percent of hereditary colorectal cancer and carries an extremely high lifetime risk of colon cancer and elevated risks for other exceedingly rare cancers. It is an autosomal dominant condition caused by germline mutations in the adenomatous polyposis coli (APC) gene. By the age of fifty, nearly 99 percent of untreated FAP patients will have developed cancer. This is the dark shadow that has lingered over one family since at least 1911, when a matriarch was first seen at the Mayo Clinic in Rochester, Minnesota for symptoms that would become commonplace in her descendants. Three of her five children died in their thirties with what they’d come to call “summer’s complaint.” Her granddaughter, genetically programmed by a defect on her 5th chromosome also developed cancer, which would ultimately take her life.

Ansleigh Adkins was fast-tracked for surgery when doctors found her colon carpeted with polyps. She has a genetic disease called FAP, familial adenomatous polyposis, which makes colon cancer inevitable.

Living with a rare disease can be a lonely experience. There aren’t the same resources available, or enough awareness about the difficulties they face. These brave people might make up a small percentage of the population, but they deserve huge recognition. Which is why ostomates in our community inspire us; they overcome almost impossible daily challenges to prove how much can be accomplished despite limitations. Here are seven incredible survivors living with illnesses you probably never heard of. One of Chelsea's biggest challenges is finding a doctor in Ohio who specializes in FAP. So instead of office visits, she meets with her physicians via phone and Skype. Every year, Chelsea has a colonoscopy to check if FAP has spread to other areas of her gastrointestinal tract. She also faces dietary challenges that vary from day-to-day.

It’s been 20 years since Kris Thompson was diagnosed with Colon Cancer at the age of 18. From his blog, Papa’s Got a Brand New Bag, here’s how Kris told his story: “I’m going to lose my hair?!?!” Those were the first words that came out of my mouth when I learned I had cancer. My grandmother, mother and uncle all had either a partial or total colectomy due to F.A.P, and were all diagnosed at a much later age than I without any traces of cancer. With that being said, why would I even entertain the thought of cancer, I mean I was barely eighteen for Pete’s sake. Besides, what eighteen year old develops colon/colorectal cancer?

My name is Colleen Mitchell and I am so much more than a cancer survivor. I am a wife, daughter, sister, friend, and teacher. I live in Boston, MA with my wonderful husband and am a teacher in the Boston Public School Department. I live close by to my parents, brothers, sister-in-law, two amazing nephews, and two goddaughters. All in all, I am blessed with amazing family and friends.

Shockley wants to spread the information about his diagnosis and experience so he can inspire others to get the screening and be aware of the condition. Additionally, there is not a lot of information about AFAP available, so he hopes that talking about his diagnosis will help the medical community.

I was devastated, I had made all my arrangements for my family during my recovery and now I would have to reschedule. Familial adenomatous polyposis (FAP) was mentioned at this stage, but I didn’t receive any more information.

My name is Dee. Although I never had colorectal cancer, I was diagnosed with Familial Adenomatous Polyposis (FAP) when I was 22 years old. I had a total colectomy IRA surgery when I was 23 as my colon was carpeted with polyps. I accepted my diagnosis and went with the flow of getting my scopes (Both gastro and sig. scopes) every 6 months. It was just an adjustment I had to make with watching what foods I ate.

I am 36 years old. For the past six years I have suffered from Interstital Cystitis and I was actually going to venture into Stem Cell treatment when my FAP/Colon Cancer diagnoses happened. Over the years, ever since I was maybe 22, I had problems that were similar to IBS, I was told that was what I had, even when I was never given a colonoscopy.

When he was 15, my husband Jesse underwent a colectomy, a procedure that removed his colon. Jesse opted to do this after learning that he had familial adenomatous polyposis (FAP), a genetic condition that caused him to develop polyps throughout his gastrointestinal tract and put him at increased risk for colorectal cancer. This past summer, the pathology report on a polyp removed from his duodenum showed high-grade dysplasia, meaning the polyp looked more abnormal – and more like cancer. Dr. Lynch immediately sent us to Dr. Matthew Katz, who said Jesse needed to undergo a Whipple procedure, a surgery to remove his gallbladder, duodenum as well as a part of his pancreas and stomach.

Hi, my name is Ivette Moya. I live in Pembroke Pines, Florida. I was 30 years old in February 2012 when this unbearable pain started on my lower left abdomen. I dealt with it about 8 days until I could barely walk. My husband took me to the hospital I usually went to and was told that I had a small ruptured ovarian cyst and I was impacted. They sent me home with Vicodin that didn’t help, without flushing me, without a CT scan. They told me to see my GYN on my next visit. In the following weeks, we met my surgeon, Dr. Henry Lujan, of Jackson South, who’s amazing. It was confirmed that I did have stage II cancer, I did have FAP (colon full of polyps…my stomach is also full of polyps) and my colon had to be removed in its entirety, including my rectum. Everything Mt. Sinai said was absolutely correct. I had a total colectomy with ileostomy on April 25, 2012. I had the reversal of the ileostomy on June 12, 2012! After the surgery I was cancer free and didn’t need any chemo at the time.

Jennifer Cross Johnson, who struggles with her Familial Adenomatous Polyposis, depression waxes and wanes with pain and health. Like many patients, she was misdiagnosed for 14 years and has endured removal of her gall bladder, thyroid and colon.

Joanna’s diagnosis of attenuated Familial Adenomatous Polyposis (AFAP), and the implications for her family. A diagnosis of attenuated familial adenomatous polyposis (AFAP), an inherited form of bowel cancer, was eventually made in Joanna’s family after she was found to have multiple polyps and subsequently searched for information herself and requested specialist help. As well as having to come to terms with the implications for her own health, her story reflects her motivation to obtain a definitive diagnosis and to ensure her family were also aware of the implications to their health.

After my colonoscopy, I was devastated with the results. I had a minefield of thousands of polyps. Most were precancerous and quite large. I also had several other spots of concern in my colon and rectum.

After being misdiagnosed with hemorrhoids at age 30, six years later Jon was diagnosed with Stage III Colon Cancer and F.A.P. The focal point of his fight - watching his kids grow up and growing old with his wife. The vehicle for that fight - competitive mountain biking. For him, he is literally "riding away from cancer.

Lorraine’s perspective on Familial Adenomatous Polyposis in her family. Lorraine describes the impact her husband’s FAP has had on them as a couple and as a family. Her story highlights the need to remember the stress experienced by family members and their need for support too. Paul, her husband, also tells his story in a recorded interview.

I am Natalie and a student at the University of North Carolina at Charlotte. I am studying to become a nurse and specialize in Pediatric Oncology. I have no history of cancer. The symptoms I had were an increased appetite, constant weight loss, anemia, and always exhausted

I graduated from high school in 1975 and worked on a farm for a short time, then in a hospital for a few years before joining the military in 1977. During my years in the Army, I was a regular blood donor, and have been for about 30 years. In May of 2005, I gave blood but when I went to give blood in August, I was told by the Red Cross technician that my iron count was too low. Due to the large number of polyps they found (they stopped counting at 50) I had to undergo genetic testing for FAP (Familial Adenomatous Polyposis), and they were expecting me to have the gene; but I didn’t. I have 5 siblings, but only one sister has been screened; she’s 51. My parents get regular screenings. My children will not have to face screening until they reach 38 years old, but they will have to be screened early.

I had been feeling ill for as long as I could remember, since the age of about 3. I went to the doctors all the time with bad pains in my abdomen but was just told it was IBS. Then, in 2012 when I was about 13, it got really bad. I was vomiting all the time and spending time off school. I couldn't do PE because it gave me such overwhelming fatigue and exhaustion. Finally, I was sent to hospital to have the issue investigated properly. I had a gastroscopy, which involved having a camera down my throat to have a look in my intestine. Before I was sedated for this, the nurse told me that I would probably wake up with a tube down my throat. This was because they thought it was either Crohn's or Inflammatory Bowel Disease, and that is what the treatment would involve.

I went to the Mayo Clinic in Rochester, Minnesota for a second opinion and they agreed on the results and also recommend that the surgery be performed. They concluded that if the surgery was not performed– I was at a high risk for dying with in the next six months.

Paul’s story about the dominantly inherited familial adenomatous polyposis

Medical Research: What is the background for this study? Dr. Vasen: People with familial colorectal cancer (CRC) have a 3-6 fold increased risk of colorectal cancer. It has been estimated that about 2% of the population have familial CRC (about 2.7 million people in the US). Previous studies showed that colonoscopic surveillance reduces the CRC-mortality by >80%. In people with hereditary CRC, i.e., Lynch syndrome (10 fold increased risk of CRC), an intensive screening program with colonoscopy 1x/1-2 years, is recommended. In familial colorectal cancer, the optimal screening program is unknown.

In his late twenties, Jon Olis began to see blood in his stool but shrugged it off until his fiancée pushed him to see a doctor. After a rectal exam, the doctor said he had nothing to worry about. He assured Jon that with no family history, it was probably just hemorrhoids. Jon’s colonoscopy showed that he had thousands of polyps and a large tumor in his colon. At 36, he was diagnosed with stage III colon cancer and Familial Adenomatous Polyposis (FAP), a genetic condition that causes colorectal polyps that turn into cancer. He had laparoscopic surgery to remove his entire colon, a second surgery because of complications, a temporary ileostomy and chemotherapy.

Author Laura Kieger and her son, Dr. Alexander Kieger, share their family’s courageous, century-long struggle with a rare genetic cancer syndrome, Familial Adenomatous Polyposis. Familial adenomatous polyposis is a rare, genetic cancer predisposition syndrome caused by a deletion mutation in the APC gene on chromosome 5. By the age of 40, nearly 99% of untreated patients will develop cancer. This is the dark shadow that has lingered over their family since at least 1911, when Mary Regan Baker was seen at Mayo Clinic in Rochester, Minnesota for symptoms of a disorder that would become commonplace in her descendants.

Jon Olis first noticed something strange in his stool in his 20s. He never told anyone about it because, really, who feels comfortable talking about what you find in your poop. But every couple weeks, after he'd go number two, he'd notice a spiral strand of dark red circling through the stuff floating in the toilet. A blood test showed Olis was severely anemic, raising a red flag that marked the beginning of his up-mountain battle. Inside of Olis's colon, a sea of thousands of polyps, like little trees, clung to his colon wall. Doctors discovered that Olis has an extremely rare disease, Familial Adenomatous Polyposis, which causes the body to produce thousands of polyps in his colon.

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.

Desmoid Awareness month is upon us!! These tees were created by a fellow Desmoid warrior (well me - Angela, owner of this little online boutique)! Except I can't take credit for the lovely heart/ribbon super rare tee!! One of our other fellow desmoidians submitted this design! 100% of the profits of the purchase of any of these Desmoid items will be donated to the DTRF on your behalf! This is usually around $7-12 per item. If you have a specific Desmoid request or would like to create a graphic yourself to be set on tees and added to this collection for other warriors to purchase, email me at angela@thonginit.com.

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.

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).

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

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.

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.

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

Familial Adenomatous Polyposis

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

Support for FAP Children and Teens

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

F. A. P

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

Familial Adenomatous Polyposis FAP

Familial adenomatous polyposis ( FAP)

F.A.P. and me

Familial Adenomatous Polyposis

Familial Adenomatous Polyposis

Colon Cancer (F.A.P.)...The Journey

Fee Cullen

Todd DESTINATION X RIDE is a solo motorcycle mission to save lives by unleashing awareness on the masses about Colon Cancer, FAP and Desmoid Tumors. www.destinationxride.org

Husband, father of 2 amazing children. FAP patient and Patient Coach for 11 Health.

Jonathan Woon Lee Husband to badass cancer fighting wife Master level donut maker Weightlifting Goal: Tokyo2020 Olympics #autumnstrong

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

Monica Marie Hernandez Cancer/FAP/Desmoid Warrior facebook.com/WhimsyBlueCancerFairy facebook.com/DreamofhopeWhisperofDarkness facebook.com/PerformersAgainstCancer dreamofhopewhisperofdarkness.wordpress.com

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"

Genetic Counselor

Medical Geneticist and Internal Medicine

Genetic Counsellor

Postdoc at Academic Medical Center

Director of Genetic Counseling Services at Sema4

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

Translational Oncology Lead at PfIzer

Clinical Psychologist

Pharmacologist

Team Leader, CMC, Cardiomyocyte Cell Manufacturing

Director, Clinical Diagnostics New Technology Baltimore, Maryland Area

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

Postdoctoral Research Associate at Comprehensive cancer centre Cleveland, Ohio

Research Scientist

Postdoctoral Researcher

Genetic Counselor

Chief Executive & Scientific Officer

Public Health Consultant

Department of Biology

Junior Research Fellow at NCBS

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.

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

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.