welcome to oneFAPvoice
- a positively charged Familial Adenomatous Polyposis community.- join today!
- login
Shrinking the Silence
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).
expertly curated content related to this topic
-
Pouchitis Is a Common Complication in Patients With Familial Adenomatous Polyposis Following Ileal Pouch-Anal Anasto...BACKGROUND & AIMS: Restorative proc...
-
Molecular Genetics of Supernumerary Tooth FormationDespite advances in the knowledge of too...
-
An F.A.P.: Introducing My Desmoid Debaclehttps://www.youtube.com/watch?v=nZn1Pa5V...
-
The Traveling J-Pouch: More Tips for Going Abroad with a J-Pouchhttps://www.youtube.com/watch?v=Vk5AmBLF...
-
Sulindac Sulfone Induced Regression of Rectal Polyps in Patients with Familial Adenomatous PolyposisSulindac sulfone (Exisulind), a metaboli...
-
colleen mitchell’s storyMy name is Colleen Mitchell and I am so ...
-
Meet Jenny from Life’s a Polyphttps://www.youtube.com/watch?v=iWMKtyyE...