I am a young married man in my early thirties who has been living with the diagnosis of FAP for 17 years. I have had a Whipple surgery, undergone chemo for desmoid tumours and 1 month ago had a total colectomy with a permanent ileostomy.
FAP is rare. Desmoids are even more rare.
It has been difficult for me to find information about how other people have navigated these waters... i think mostly in part due to the rarity of the conditions. Lately I have found sharing my experiences via a blog helpful and I thought others in a similar situation to mine might find it helpful to read.
You can find my blog at: