Skip to Accessibility Menu Skip to Login Skip to Content Skip to Footer

My Son Has Familial Adenomatous Polyposis (FAP) Syndrome

CommunityMember60e59b's avatar image

By CommunityMember60e59b

Last Updated:

2 min read

My ex was not happy with our son’s height,. He felt our son wasn’t growing.

I didn't want to believe anything was wrong

I reminded him that our older son, Michael grew between the ages of 12 and 20 years, and he’s 1-1 1/2 inches taller than his father. Our younger son was about 13-14 years old, so, I felt, he will grow too.

I also have twins who are my oldest girls and they have disabilities, and I did not want to find out that any of my other 2 children have any issues.

By providing your email address, you are agreeing to our Privacy Notice and Terms of Use.

But his father was not happy about his height, and went to the pediatrician, who sent him to the endocrinologist. The endocrinologist sent my son to the hematologist, who tested my son.

Never heard of this genetic syndrome

She said he has familial adenomatous polyposis (FAP) syndrome.

We did not know what that is -- never heard of it. She explained it to us, somewhat: it’s a rare genetic syndrome, and we had to go to a  gastroenterologist  who would check his colon for polyps with a colonoscopy.

Surgery to remove part of his colon

We found out that he had a lot of polyps, which had a chance a chance to become pre-cancerous. Our son needed surgery to take part of his colon out. The doctor referred us to a very excellent surgeon that took out his colon, and said he did not need an colostomy bag. He is able to go to the bathroom, to stool.

Coordination between doctors was helpful

Fortunately, all these doctors belong to the same hospital system, because each doctor was able to look up what the other doctors said or did with my son. My son’s history is in the computer, so all the doctors can see what the other doctors have done, even with unrelated treatments.  My son seems to have a few different issues, that have nothing to do with each other: fap syndrome, inflamed pancreas, and scoliosis. Other issues, with nothing to do with his fap syndrome, kept popping up.

I am still trying to understand what fap syndrome is all about as well as his other issues. If anybody out there has fap syndrome, I would like to talk to them, so  I understand what I am dealing with.

Treatment results and side effects can vary from person to person. This treatment information is not meant to replace professional medical advice. Talk to your doctor about what to expect before starting and while taking any treatment.
This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RareDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

Please read our rules before commenting.