Joined: 16 Oct 2005 Posts: 1 Location: Austin, Texas
Teenager With Hereditary Pancreatitis Posted: 10-16-05 07:30am
My 16 year old daughter was been diagnosed
with hereditary pancreatitis 2 years ago.
She has had 3 ercp's to open her
pancreatic duct and last year had major
surgery (puestow procedure) in houston.
She still has reoccurant pain about 4-5
times a week in the a.M. And is taking
pancreatic enzymes with all meals. I
heard there was a hereditary pancreatitis
clinic that just opened in pittsburgh.
We would love to hear from anyone with
this disease since it is very rare.
Cindy
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Clareh
New User, Becoming EHEALTHy
Joined: 28 Oct 2005 Posts: 6 Location: Oxfordshire, UK
Posted: 10-31-05 08:06am
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.
