Hi everyone! Who's ready for this week's discussion topic? 😊
📣 What pancreatitis issue is most important to you and why?
- Access to treatments
- Pain & Symptom Management
- Education & Awareness
- Challenging Stigmas
- Research & Breakthroughs
- Other
Let us know in the replies!
Hello Skye!
Thank you for your interesting question!
All the above topics are good, please!
From my own experience and from what I've read from others' comments, probably the most important thing is initial diagnosis and educating GPs so they are prepared to consider pancreatic problems in the first place, before people are crippled with the symptoms.
From my perspective, I'd like nutrition education to be pushed at all levels, everywhere, so that people are more aware of the importance (vital/essential role) of vitamins and minerals. Deficiencies of these, caused by poor digestion and impaired absorption, have such an impact on people's lives, but are often overlooked. Obviously this is one consequence of pancreatic problems.
Lots of us encounter immense ignorance at smaller hospitals which only compounds our suffering as this is where we are first sent by ignorant GPs. It is not always easy to get to the bigger hospitals where we are understood, respected and swiftly given the right treatment. Ideally there should be treatment protocols for people with pancreatic problems that all hospitals should follow.
(Even better would be a pill that could be given to the obnoxious, conceited and arrogant consultants in smaller hospitals so they could have 48 hours or so's experience of pancreatitis!! 👀).
I'd love to know that there is more R&D and education into SIBO. Because it isn't widely recognised and is hard to diagnose and treat, I am sure that the incidence of it is much higher than the statistics suggest. Because of this it doesn't get the focus and funding that it warrants, and so starts a vicious circle. It is another common consequence of CP.
It's very good to know you are here for us Skye! I so wish we could clone you and your resources so you could support pernicious anaemia and vitamin B12 deficiency in a similar way!
Hi deniseinmilden! 👋
Thank you so much for your thoughtful and detailed response. Education is definitely one of our top priorities at M: C and supporting the standardization of the best treatment protocols.
"(Even better would be a pill that could be given to the obnoxious, conceited and arrogant consultants in smaller hospitals so they could have 48 hours or so's experience of pancreatitis!! 👀)."
^ This made me laugh. I wish more people understood!
I'm glad I can be here to help. 😊 You guys are the warriors though! Together, I think we can make all these priorities a reality!
Thank you Skye!
Denise,
Adding to Skye's thanks for the detailed response. I am looking more into SIBO now. We will consider sharing some information, depending on what we find. Please email us at info@mission-cure.org if you are interested in getting more involved in Mission: Cure. Take care!
Thank you Megan! That's great to know.
I'm already on the mailing list for Mission Cure and do access your excellent work, thank you!
Best wishes, Denise
Getting diagnosed
Getting an accurate diagnosis can be tough! Here's a webinar that may help you know what to ask for: mission-cure.org/webinars/p...
Hi Skye, I think Pain management and treatments but really all of the things you mentioned are very important to me. Hope you're having a good day.x
How do you deal with the stress and fear of having chronic pancreatitis?
