Re: marc/marci- OK, Now This is Just Getting Funny

April 22, 2007

Where I enjoy a lively exchange as much as the next person, I have to

pause the conversation and revisit my original remarks. Nowhere did I

say anything about transplant patients (or their families, neighbors

or dogs). Though frequently quoted, the statements are sadly mythical.

Yes, there was anger. However, the anger I expressed was at a member

dismissing another PSC patient's opinion simply because the patient

had been relatively recently diagnosed. This dismissive intolerance is

shortsighted as this forum benefits from sharing all interaction

members have with their individual medical team. I want to hear what

hepatologists we have not met with are doing to treat PSC. I do not

care if you were diagnosed 20 years ago or 20 minutes ago; if your

hep/gastro team is hitting PSC from a new, provocative perspective, I

want to hear it!

The attack on negativity was made in the interest of those readers

needing a helping, fighting hand reached out to them. PSC is a tough,

life-long fight. This group coupled with the exceptional advances in

science R & D has the power to shut up the dark PSC voice calling for a

" throwing in of the towel " . Remember when your family was first

diagnosed? Remember the first gut-wrenching time you read " liver

transplant in less than 10 years " ? Remember when you had the towel in

your hand? Now, do you remember that spark from this forum, or your

hepatologist, or study publication indicating that that just may not

be your future? Remember hearing that the face of PSC is changing

daily and that the future is just that, the future? I do. This message

is too powerful to keep quiet and new members as well as older members

will always hear it from me.

Well, keep those cards and letters coming.

-Marci

*******************************************************************

Original Text:

" Technically, he has been DIAGNOSED for two years. Perhaps your

intuitive insight can provide the exact date he contracted PSC.

Why would you push your agenda of negativity on a case with which you

have completely NO knowledge (I know this because you are not on our

HEPA list)?

No one is promoting " illness is weak " , but vapid complaining and

failure to fight is! And where your Klug example is valid, I

query how many PSC patients who never require liver transplants write

books about it?

Bound by latest statistics, Marc will keep his liver, as will an

overwhelming majority of PSC readers here. The day the pessimists

accept this cold hard fact is the day that this yahoo group will

radically evolve forward! "

April 22, 2007

since psc is progressive the observation of a diagnosis less than 3 years before was just noted.See what's free at AOL.com.

April 22, 2007

When I was being diagnosed for what liver disease I had, PBC seemed

to fit my profile, I also read a bit about PSC and thought I hope I

don't have that, as it appeared to be a very aggressive disease,

whereas PBC seemed a more benign disease in that almost every PSC

article seemed to say I would need a transplant, whereas PBC articles

seemed to be along the following lines

'PBC takes a long time to develop and it affects different people in

many different ways. Most have few or no symptoms for many years and

some live with a benign form of the illness with little or no

discomfort. Many do have symptoms, but never reach end-stage PBC. For

those few who do reach this stage, liver transplantation may be

considered, especially where quality of life is deteriorating. If

medical treatment no longer controls the disease and the person has

severe liver failure, transplantation will be considered. Because PBC

progresses slowly, transplantation can be carefully planned and those

with PBC have very good results compared to all liver transplant

patients.' from http://www.pbcfoundation.org.uk/Information.htm

If I had read what Marc had written I may not have been as dismayed

as I was when diagnosed with PSC.

At this website

http://www.nzma.org.nz/journal/115-1159/120/

there is a list of liver transplants done in New Zealand (population

4 miilion)from 1998 to 2001 14 people with PSC were asessed and 9

were transplanted, 9 people with PBC were asessed and 7 were

transplanted. So not a lot of difference in transplant rates between

PSC and PBC.

I am not very good at reading, I did not feel Marc/Marci have given

the impression that they felt having a transplant is 'throwing in the

towel'. Having a transplant is just part of the PSC regime and thats

the way it is. How I read Marc's initial post is that he is

saying 'he has looked at the statistic avaiable and thats how he

interprets them and what he is doing personally to live with PSC.'

Statistics are human beings with the tears wiped off. ~ Brodeur,

Outrageous Misconduct

or

Statistics may be defined as " a body of methods for making wise

decisions in the face of uncertainty. " ~W.A. Wallis

from the bottom of the world in New Zealand

> Remember hearing that the face of PSC is changing

> daily and that the future is just that, the future? I do. This

message

> is too powerful to keep quiet and new members as well as older

members

> will always hear it from me.

>

> Well, keep those cards and letters coming.

> -Marci

April 23, 2007

Marc,

I agree with just about every word in your

latest posting.

I do not agree with your statistics. If

you are saying that half of PSC patients never get diagnosed it is conceivable that

the number is correct, but that would not help anyone coming to this forum,

since they would not be coming to the forum without diagnose. Nothing on this

forum and in the scientific literature I have read shows that there are 60-70%

of PSC patients that never get to transplant. It would mean that 60-70% of the

patients would not need a transplant for 20-50 years depending on when they

were diagnosed. There is no base for an assumption like that, and it would be

plain wrong to give these numbers to newcomers. I know of only a few people who

have had PSC for 15-20 years or more. It is true that when people have had PSC

for that long they are probably less prone to go to a forum like this, and that

they are most likely less computer savvy than younger people, but I don't see a

reason in the world to assume that 60-70% of people diagnosed with PSC will

never need a transplant. On top of that, not needing a transplant does not mean

in any way that you will be asymptomatic and that you will be living happily

ever after. Some of the symptoms of PSC are in my opinion worse than getting a

transplant.

It is okay to say that PSC is an individual

disease and that a PSC diagnose does not necessarily mean anything yet, but

giving them information that does not have any real research behind it in my

humble opinion is not helping them fight, it is denial and it is wrong.

Chaim Boermeester, Israel

From:

[mailto: ] On

Behalf Of Marci/Marc

Sent: Sunday, April 22, 2007 22:48

To:

Subject: Re:

marc/marci- OK, Now This is Just Getting Funny

Where I enjoy a lively exchange as much as the next

person, I have to