Re: To Meghan/hereditary pancreatitis

[Guest guest]

Meghan

Hi I just read your post. And may be able to answer a few questions for

you. We just went through testing in November 2002.

It's no big deal. Another tube of blood. Just one and that's it. Our

blood was drawn her at our local lab in Bangor Maine and then sent onto the

University of Pittsburgh. 3 weeks later, the Dr sent us our results. My

Daughter who has full blown CP, 1st major attack at 10 was the reason we were

all

tested. When I say we i mean, Myself, my husband, son and Cassie. All of us

tested neg for Hereditary pancreatitis that is the PRSSI (I think that's the

mutation) gene for hereditary pancreatitis. They also tested us for an

additional

mutation called SPINK1 (Serine protease inhbitors Kazal 1). Cassie and I

both tested positive for this. Dr's have provided very little information on

this. Threw reseach I have found thtat SPINK1 presdisposes some people to

pancreatitis. It does not cause it, just predisposes you to it . Because of

this

Cassie now has the following diagnosis Hereditary ideopathic chronic recurrent

pancreatits. This dx has done nothing but let us know where the pancreatitis

comes from. It has not changed her treatment options or plans whatso ever.

Below is a link to Dr Whitcomb at University of Pittsburgh. I have e-mailed

him 2 x's with questions and have gotten answers even though his is not " our "

dr. He would be the person who caould reply to any concerns you have.

<A HREF= " http://www.whitcomb+@pitt.edu " >http://www.whitcomb+@pitt.edu</A>

Hope this helps and God bless

Patty Hurst

Bangor, ME

Maine State Rep

PAI