Hi cindy,

i think I have hereditary pancreatitis. I live in the uk, and there is a study group in liverpool who speciliase in this. I'm going to see them in december. I haven't had any surgery (apart from exploratory ercps which set off full blown pancreatitis) but I have had ap about 22 times over the last 13 years, and my grandmother has it as well. Sorry to hear about your daughter - it's so, so painful. It's interesting you mention that she gets pain in the morning - I have acute, not chronic, pancreatitis, but it also starts in the mornings. We just can't find out what's triggering it, although i'm convinced that stress plays a big part.

I'll let you know what happens in liverpool - I don't know about the usa, but in the uk it's just so hard to find anyone with any answers. They all say 'not my area of specialisation'. I know it's on the boundary of what's known in medical science - but someone out there must know a bit more! I would happily travel to the states to see someone if they were able to tell me a bit more.

Regards,

clare

Hi cindy,

I am a 20 year old woman, I had my first pancreatic attack when I was only 11 and had 9 more after that in a 2 year time span. After my first attack my mom remembered she had had pancreatitis herself when she was 15, it was normal to believe that it was hereditary. We went to the hospital in Pittsburg and got our tests done but it came out negative. We are enrolled in a case study where they are trying to find a cure to pancreatitis. I also went to the Georgetown hospital, john hopkins, baptist, Mayo Clinic in Rochester, jackson memorial and many others but to this date no known cause. Thank God I havent gotten another episode since I am 13 but I always live with the fear of having it again. If you want to ask me any questions please feel free to do so.
C