Campaign Capital Hill

[Guest guest]

Jerry,

You wrote, " You need to turn me loose in D.C. so I can lobby for some of these

issues like pain control and health care. "

I am more than interested in finding someone commitied and able to take Campaign

Capital Hill to the next level. I get weekly notices of what is going on in

congress and am very active in writing letters and telephone ing my local

Senator and Representative. What I deeply desire to do is journey to DC and

speak before congress. This would be a great activity. And, since almost

everything eventually deals with our well-being, it wouldn't matter which week

someone visits congress (unless they are not in session, of course).

I am very serious about this. If you are interested in working with this

committee, the only requirements are to ensure that the rules of etiquette are

maintained. Although personal experience and sharing your story is important, if

you have ever been in a debate or done public speaking, then you are aware of

making your point using a professional approach, therapeutic, interpersonal

communication skills, nonthreatening, hostile, or profane language, and quoting

facts / statistics.

We need to get serious about changing the image of persons with pancreatitis. I

just purchased, Diseases of the Pancreas, a new book on pancreatitis and

pancreatic cancer. The chapter on chronic pancreatitis was almost completely

focused on alcoholic pancreatitis. The facts that were given re: pain, weight

loss, causes, treatments, surgeries, and more were simply not accurate, or at

least were not all inclusive. That is wrong. There is so little to use to

educate physicians and / or the public on pancreatitis and what is available

doesn't accurately portray the situation.

I have been approached to merge with other organizations. The interest has been

the fact that we have such an active message board. Many organizations want to

reach more patients but have been unsuccessful. The reason I have not been

interested in a merger, although the benefits might provide additional

resources, is that the patients' pancreatic voice would be lost. I don't think

joining forces with a pain group would give voice to the unique needs of the

person with pancreatitis. Merging with a diabetes group would soon silence the

voice of pancreatitis which needs to emphasize that pancreatitis induced

diabetes is not heard through the ADA. Even the attempt to connect with other

disability groups rarely is able to see the unique difficulties of being

disabled and 'looking so good'.

The PAI wants to give voice to your stories and have them heard in the halls of

congress, where legislative changes can occur. A day does not go by where I sit

in awe that such a catastrophic, disabling, deteriorating disease is present

among the citizens of this world, yet remains foreign to most, and for those who

do know what it is, their knowledge is incorrect or they have no understanding

of the magnitude of the problem.

And, lastly, today I received an email from a family member telling me their

loved one died of pancreatitis. Not only did they feel lonely in their grief

after the funeral, their loneliness was even worse, since no one that came to

pay respects even knew what pancreatitis was. This disease destroys individual

lives and this disease kills. It also destroys families during the illness and

after the funeral.

The fact that we are all so ill makes it difficult to get anything done. Our

hearts are committed, but we lack the physical and emotional stamina to do what

needs to be done. Trying to have an educational symposium was a great idea, but

everyone is too sick to attend. This has been sad for me, but has given me the

time to pursue other educational options. One, has been to go to Capital Hill

and speak before congress. Does anyone live in DC that would be interested in

participatin and providing a pallet on the floor?

Karyn E. , RN

Executive Director, PAI

Pancreatitis Association International