Research

[Guest guest]

I know we talked about this before and then I think the thread stopped. Is

there a foundation or group that raises funds for research and cures for

pancreatitus?

If not, why? Can we start one?

I'm carted a couple of elephants here. In January of 1987, I was working

the overnight shift at WRKR in Racine/Milwaukee (Radio Station). My career

had mainly been in radio up until that point. That night, I had to make an

air-check. This is a tape that you create while you are on the air, and the

system skims what is going on every time you open the microphone. I had not

made one in a while. I went out to my car to retrieve a cassette to use and

slipped on the ice and suffered a skull fracture.

Over the course of the next 20 days, I had lost the hearing in one ear, and

eventually lost useable hearing in the remaining ear.

That was a personal crisis which I could go on about but will keep it brief

here. The doctor said I would never work in radio again. A year or so

later, an experimental procedure was developed and I was the third one to

receive this device, which was implanted in the cochlea and mounted on my

skull. Out side the skin, I where a processor which codes sound in to 21

channels to help me hear again. It is completely different than normal

hearing, it is very robotic, but it helps. Later, I did work in radio

again. I started out with having an interpreter take phone calls.

The surgeries didn't go well at first, the implant had to be removed and

reinstalled once. Throughout that time they had me on very high doses of

steroids, which may have contributed to my having pancreatitus. I also

developed type 2 diabetes which appears to be a common side effect to

someone who has had high doses of steroids over a long period of time. I've

been told that people having a transplant often develop diabetes because

they are given high doses of steroids over a period of time to help fight

rejection.

So, I have high blood pressure (heredity), then the skull fracture and

hearing loss, followed by diabetes. The fourth elephant would be

pancreatitus. When I was originally diagnosed, the family doctor thought I

was having a heart attack, and I was taken to the hospital and sat there for

a long time until something I said triggered something in the emergency room

and they started looking for pancreatitus. I spent over a month in the

hospital then.

My wife was diagnosed with MS 13 years ago. She has a hard time seeing past

what she is dealing with to have patience and understanding for me.

This weekend, I am walking for MS with my family. About a month ago, my

brother was also diagnosed with MS.

It got me to thinking how no one outside my wife I feel really understands

that pancreatitus stays with you, and it is on par with MS as far as

diseases go. I mean, there is no cure, it is always with you and could

flare up without notice. Those of you familiar with my story knows that I

brushed death several times with my last attack.

I sometimes have to catch myself when discussing this with my wife because

it always ends up looking like a game of one-upsmenship, and that is not the

point.

Here I sit this weekend looking to walk in the MS Walk. Television had a

main character (West Wing) with MS, and it certainly has public awareness.

Yet no one seems to know about pancreatitus outside of people who suffer

from it. There is no national pancreatitus association like the one for

MS(that I know of). There are no walks or telethons to create awareness and

raise money for a cure. I am wondering why?

So, back to my original question... Is there a group, foundation,

association or organization on the scale of such a group as the National

Multiple Sclerosis Society for Pancreatitus?

Sorry for rambling on and preaching to the choir... It is late and I have

not been able to sleep.. Going through one of those nausea periods which

keeps me awake.

One final note, I am very thankful for this group. Before joining it, I

didn't have anyone to talk to about what I was going through that people

could understand. The doctors are as perplexed, I believe, as I was. I

mean it seemed like they were taking their best educated guesses in

treatment, other than to try and lessen the pain. Joining this group has

been a Godsend because I know I am not alone, and I get all kinds of help

and encouragement from all of you. Thanks for letting me ramble!

-Bob Potter

Potter

bobpotter@...

[Guest guest]

Bob,

Karyn is hoping that the PAI will eventually become such an organization

that can raise funds for research through donations and such. However,

it is taking some time to get the paperwork through. I think there is

one that raises funds for all pancreas reasearch, not just pancreatitis.

It is called the Pancreas Foundation and I believe they have a website.

Kimber

--

Kimber

Vallejo, CA

hominid2@...

Note: All advice given is personal opinion, not equal to that of a licensed

physician or health care professional.