The Pancreatitis Association, Inc.

 

 

Quick Links!

 Pancreatitis Around the World! Where R U?

 Speaking Out on Pancreatitis: Hear Our Stories  

Share Your Story

 In Their Honor

The Pancreatitis Association Memorial

Education = Awareness Check out the merchandise at Cafe Press

What's Coming Down the Duct?    Weekly Pancreas Web Alerts

Online Discussion Board & Support Group

On-Line Forum and Chat Group

PAI Top5Plus5 Library

 

Aim and Objective

The Pancreatitis Association, Inc. is a certified nonprofit organization, with 501(c)3 registration pending, established for the purpose of providing educational support to persons with pancreatitis.


Those who are affected by pancreatitis

The Pancreatitis Association, Inc. provides services to anyone with pancreatitis, but there are always many others whose lives are affected  by this disease: families, caregivers, friends, neighbors, church members, healthcare workers, etc. We are all affected by this disease. Therefore, we feel it is important to offer educational support and information to enable everyone, then, to make informed healthcare decisions and understand the support needed by the person with pancreatitis. 


Services

The Pancreatitis Association, Inc. was established to provide educational support and information so persons with pancreatitis would have a better understanding of this disease. Of course, it is easier to understand what 'went wrong' if there is an understanding of how the pancreas works when it is healthy, the inter-dependent relationship the pancreas has with the other organs, as well as the role of body - mind - spirit.  While, pancreatitis does not yet have a cure, becoming informed healthcare consumers are essential to our emotional, mental, spiritual, as well as our physical well-being. Health is not merely the absence of disease, but about achieving the utmost quality of life.

One of the most important aspect of our services is to make sure no one feels isolated and alone.

Pancreatitis is a catastrophic, progressive, debilitating, deteriorating, disabling disease. The primary symptom of pancreatitis is severe, excruciating pain. Unfortunately, this can be a very difficult disease to diagnosis. With pain being a very subjective symptom, many patients with chronic pain who do not have a supporting diagnosis, are often treated as 'drug seekers'. It is difficult to comprehend how a small organ, like the pancreas, can attack without warning, and leave a patient in crippling pain, especially when the patient was fine less than an hour earlier. Well, that is until someone experiences the disease firsthand, or until you watch this disease take down even the healthiest, best fit, and well nourished of any. But it can, and it does.

It can, definitely, leave a person feeling isolated and alone.

A study and focus group were done prior to the establishment of the Pancreatitis Association, Inc. to evaluate what was already available to educate persons with pancreatitis, what might compliment these services, and what needs remained. Research did not identify any services focused specifically to the pancreatitis patient, though there were many medical related websites on the internet, geared to physicians, focused on abstracts of research papers on pancreatitis. These were difficult to read even by a professional. Also, the abstracts did not give much information and there was a fee to access the body of the text. There were a few government websites, but the information was scant and seemed to be a repeat of the previous site information. The Pancreatitis Association online support group was one of the first available in 1999. And, that is, if there was computer access. Hospitals offered chronic pain groups, there were community based diabetes education groups. That is, for those physically able to get there. There remained others who needed contact and information.

Services need to be available and accessible to each and every person whose life has been affected by pancreatitis. Our goal is to ensure that no one is left to face the challenges of this disease alone.  Therefore, it is our attempt to offer many different venues for educational support and the delivery of information: Some examples of services provided by the Pancreatitis Association, Inc. are:

  • Telephone (Ear to Ear) Educational Support and Outreach;
  • Local (Face to Face) Meetings;
  • On-line (Eye to Eye) Internet Discussion Group;
  • Pen Pal & Letter (Pen to Paper) Writing Circles;
  • Hospital Visitation Program, to visit those who are newly diagnosed, as well as provide visits when someone is in the hospital ... again;
  • Hosted Group Discussions or Moderated Forums
  • Community Outreach / Speakers' Bureau  These may be targeted to the general public, such as at a library or community health fair.  They may be delivered by request from churches, social or health care organizations;
  • Information, Resources & Referral Databases are accessible via the website, and can be obtained through the mail.
  • The Pancreatitis in the Schools Project works to provide educational support to school teachers and school nurses to help integrate the child with pancreatitis to have a full, complete and safe educational experience, with full regard to their medical & psychosocial needs.

Symposium on Pancreatitis

This one or two day event is held to promote sharing of conventional and alternative therapies in a common goal to improve the quality of our lives, and ultimately, a cure. The target audience are persons whose lives have been affected by pancreatitis. This includes the patient, family / friends, and the others listed above. The speakers invited are the most reputable in their field. They include Pancreatologists, Gastroenterologists, Pancreatic Surgeons, Pharmacists, Nutritionists, Registered Nurses, Diabetes Educators, Pain Management Specialists, and more.  Those who attend, both participants and speakers, leave with a renewed sense of hope in a seemingly hopeless situation.


Privacy & Confidentiality


Disclaimer

Pancreatitis is a catastrophic, progressive, disabling, deteriorating, and debilitating disease. Care requires the skills and expertise of an interdisciplinary healthcare team, often under the auspices, direction, or consultation of a pancreatologist. The Pancreatitis Association, Inc. can neither offer medical advice nor substitute for this important relationship with your health care provider.

The Pancreatitis Association, Inc. expressly disclaims all responsibility and liability arising from your use of or reliance on the site or the information contained therein as a reference source, and for any advice on treatment or services given by anyone on the site. 

You agree to assume all responsibility in connection with choosing a health care provider, treatment program, medication, surgery, etc., whether or not you obtained information leading to your choices. through the site.


This website edited by Karyn E. Williams, RN and last updated on 07/20/2007

This website does not host or accept any advertisement.



Karyn E. Williams, RN
Executive Director, PAI
Pancreatitis Association, Inc.

http://www.pancassociation.org
Corp. Office: Indianapolis, Indiana
Telephone Hot Line: 1-317-340-7513

[Toll Free Number Coming Soon]