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.
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.
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.
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.
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.
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!
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!
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.
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.
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.