Rare Diseases Community
FAP
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FAP

Is there anyone out there with Familial Polyposis (FAP)? I was diagnosed when I was 19 (55 now), had total colonectomy and six years ago Whipple surgery. Would love to chat with someone who understands this disease.
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3171100_tn?1344118075
Hi Mimi, i am 47 yrs old and was diagnosed with fap  about  3 or 4 yrs ago now, have had 2 colonoscopies  and have been told i have over a hundred polyps in large bowel  and just a few in the rectum, Surgery has been planned for september of this year (2012) with removal of all the large bowel, will keep small bowel  for now. Have high risk of desmoid tumours , so the doctors and nurses will be keeping a close eye on this.
Most of my brothers and sisters have been diagnosed the same. My mother who is 71 now has a colostomy now, she has the afap gene where i have the fap gene.
I have been looking on the internet for information about this fap , and find that i know more about it than my own gp...
When i go for other tests i tell them that i have fap, and they look at me like i am from another planet, they have no idea what it is..
I know the operation is a major operation, i am worried about having it done but realise it has to be done as i have been told that some of the polyps have now started to change.
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Hi I have FAP I was told I had it at age 12 now I'm 19 I still have everything but my mom brother and grandpa have had the surgery there is a fb group that my mom started with tons of people who have it. its called living with FAP familial adenomatous polyposis
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Hi I have FAP I was told I had it at age 12 now I'm 19 I still have everything but my mom brother and grandpa have had the surgery there is a fb group that my mom started with tons of people who have it. its called living with FAP familial adenomatous polyposis
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selmaS
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