Thank you for posting this - my 11 year old daughter has FAP and now is battling the terminal Desmoid Tumors that can be linked to this condition. Her father is in stage 4 with this and not expected to live much longer. They both have already had complete coloctomy's with internal J pouch for my daughter and an illiostomy bag for her dad. I wish there was more awarness about this horrible condition.
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