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
|
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.
The site is not a replacement for professional medical opinion, examination, diagnosis or treatment. Always seek the advice of your medical doctor or other qualified health professional before starting any new treatment or making any changes to existing treatment. Do not delay seeking or disregard medical advice based on information written by any author on this site. No health questions and information on eHealth Forum is regulated or evaluated by the Food and Drug Administration and therefore the information should not be used to diagnose, treat, cure or prevent any disease without the supervision of a medical doctor. Posts made to these forums express the views and opinions of the author, and not the administrators, moderators, or editorial staff and hence eHealth Forum and its principals will accept no liabilities or responsibilities for the statements made.
Schizophreniahealth
This page was last updated on June 11, 2008
