Chuckus posted:First of all, WELCOME! Glad you found us.
Secondly, educate YOURSELF and be your BEST advocate! I'd strongly suggest you goto a few sites, such as Mayoclinic.org and look here
http://www.mayoclinic.org/dise...inition/con-20035680
To get a good understanding of our lovely genetic mutation and what some possibilities are with it.
I just saw this, had a moment to respond quickly and will be back later.
Also there is no such thing as 1/5 chance of desmoids........desmoids come about due to genetics and where the mutation is and also each person's body is different, so I don't (personally) agree about saying 20% of us get them.......it could be more or less, but, yes they do occur and can occur.
In any event, make sure and educate yourself...........don't overdo it, do small portions at once because you'll overwhlem yourself.
We are all here for you!
Charlie
(Sorry in advance if I'm replying wrong)
I really appreciate you taking the time out to reply to my post! I feel like I have educated myself from medical websites but this is the first time I've found a place with real experiences from people. Oh I've already had to experience advocacy, I first went to Yale where they said I was fine and ripped out my IV, meanwhile I had a hemoglobin of 5 at the time and could barely stand without feeling feint. So my parents and I demanded further tests, lo and behold I was diagnosed with FAP and IBS. Yale made the entire experience just a disaster so personally I don't recommend anyone to go there for treatment. They also wanted to get my colon removed around 35 and that seems a bit like testing fate.
About the desmoids, I actually have a PDF from my doctor going into detail about where the mutation is, so I'll experiment to see if I can find out where the desmoid mutation occurs (I'm no geneticist but hey worth a shot).
Yea, I have at times overwhelmed myself to the point of being way too worried and now I'm trying a different approach to see how others have been doing with this instead of too much research that is often daunting.
Thank you so much!
Jenn