Blogs and Vlogs

In their own words, fellow survivors discuss life with hereditary colon cancer syndromes. We encourage you read or listen and respond to them. Share your experience. Ask questions. Inspire others... this is your community.

Chronicles of a Lumpy Person

Welcome to my blog. Follow the ups and downs of my family life and my personal journey with Cowden's syndrome!

FAPulous TV

This video channel explores what it's like living with Familial Adenomatous Polyposis (F.A.P.). So, grab a snack (other than popcorn which can lead to a small bowel obstruction) and tune in! Feel free to leave video suggestions, tips, or questions! - FAPulous TV

From the Desk of Travis H. Bray

This is my first step in continuing what I started in April, 2013. I hope you enjoy reading about my experiences growing up and living with FAP. 

I Have Lynch Syndrome

I have Lynch syndrome. I am a wife and mother in my early forties who recently received my master’s from Northwestern University. Though I am not a doctor, I do have a strong background in biology and have conducted extensive research on Lynch syndrome... I was diagnosed with Lynch syndrome in May of 2011 and due to the rarity of this syndrome, I was forced to educate myself and become my own advocate for my medical care.

J-Pouch Life

These are stories of happenings and feelings about the Jpouch surgery, preliminary surgeries, and life without a colon. Please explore the postings, and we'd love to hear from you in the comments, via email, or heck you might as well join this blog and click here to contribute yourself!

Life's a Polyp

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.

Like A Pork Chop in a Synagogue

Heather created this blog during the It Takes Guts! 21 Day Challenge to "be mindful about a disease that is unfortunately very close to [her] heart." She shares her family history, along with her diagnosis and personal struggle, as a way to stay positive. Follow her transformation from anger and vulnerability in early posts to her 'warrior spirit' and positive outlook by the end of the Challenge.

Mike's Battle is my Battle

On June 25, 2010, at age 37, my husband was diagnosed with colon cancer. Following a right-hemicolectomy, genetic testing determined the cause was due to HNPCC/Lynch Syndrome. On December 9, 2011 he had a subtotal colectomy.

Not Enough Chlorine in the Gene-Pool

I guess I’m just an ordinary person, living an ordinary life, with an extraordinary challenge. I have a genetic condition called HNPCC, or Lynch Syndrome. The spell-checker for my genes is turned off, so transcription errors accumulate without being corrected. Once there are enough errors or errors in critical sections of DNA, it’s Cancer time.

OstomyOutdoors.com

My name is Heidi Skiba, I’m 40 years old, and this blog chronicles my return to the world of outdoor adventures with a permanent ileostomy.

Peutz-Jeghers News

I've been living with Peutz-Jeghers syndrome for over 50 years, reading the literature for over 30 and writing and speaking about PJS since 2000. This blog is to help others find information on this rare genetic syndrome.

Powerful Patient Online Radio

Do you feel helpless in the face of "the system"? This show is to help you learn how to take control and steer your way to health. Hear how others have met these challenges and overcome them. Learn how you can do so too. This program is a forum to share your experiences, ask your questions, and learn how to create and manage your health care team.  Make the healthcare system work for you!

RARE Toolkits: Using Storytelling to Raise Awareness for Your Rare Disease

Many within the rare disease community do not know how great an impact they can have by sharing their story. Telling your story can be difficult, but this toolkit is intended to help you overcome the challenges by offering advice on ways to get started. 

Riding Away from Cancer

Hi, My name is Jon Olis. I currently am a survivor of Stage IIIC Colon Cancer and FAP. I was diagnosed with both in June of 2004 at the age of 36. Things were a little rough for me for a while. 4 major surgeries, 6 months of chemo, removal of my colon, re-routing of my small intestine to my stomach, etc.

Taking Control: Gaining Independence as a Young Adult with a Rare Disease

This toolkit will support rare disease families and their children who are approaching adulthood by covering the steps they should take to become more independent, strong, and proactive individuals.