Re: PSC statistics

[Guest guest]

Hi :

Well, I just sent you a message and this message was also very

informative to me. I had no idea at all how rare this disease is with men

and women. Sorry I got the info wrong, but all of the docs I have had have

made me so mad, I guess I just listen to half what they say.

I hate that about smoking. When I worked as a Society Editor and worked

in the news department I smoked about 1-1/2 cartons per week. Now that I can

smoke and no one is on my case, I only smoke about 1 carton every 3 weeks!!

Now that is sick -- LOL!!

You read or will read that I am doing something about awareness and have

been trying to do this for 3 years! I have had some articles about me in the

newspapers, but some people still do not understand. However, I just " keep

on keeping on " , so it is not as if I sit around and think about this all of

the time and become depressed. I have had a mental disease (severe manic

depression) for 8 years and have been on the " right " medicine for about 3

years. All of the docs, including Duke say that my meds for depression are

in no way related to my PSC. In fact, it helps a lot.

My problem, and my only problem with PSC, is the pain. I don't know and

am yet to find out how many PSCers have this extreme pain. It is so hard to

ignore.

You see, I have been to the depths of hell with the mental disease, so

nothing and I mean NOTHING can ever be as bad. I would so much rather have

PSC and die from this, rather than to go back to one second of the black

side of mental health. Believe me, this is something that no one would EVER,

EVER want to happen to them or someone near them!! So, as you see, I have

been literally been through hell and back. But one good thing has come out

of all of this -- my God. I call him " my God " because that is the only way I

can describe him. Through all of the suicide attempts, he has stopped me. I

am not afraid of death, in fact, I look forward to the peace and relief of

pain and to be with him. I know this sounds unbelievable, but I do know

where I will be when I die -- there is no question about that at all!! NONE!

I love people so much and I try and help so many others that are so much

worse off than I am. Everyday I see a person, child or an elder person that

is so much worse off that my heart breaks and my I get sick at my stomach.

Don't get me wrong, I love children (have two grown sons), but the elderly,

liver disease and organ transplantations are nearer to my heart. I do wish

someone could get something nationally started on how the elderly are

treated -- it is heart-wrenching. Many say, that is alright because they

have lived their lives. That isn't true. Yes, they have lived their lives,

but they have given us so much and to just sit and listen to there

experiences are wonderful. They need so much more kindness.

I didn't mean to get on my band wagon, but sometimes it just comes out

and tonight I really shouldn't be doing it. I have to get up and travel to

my son's in Dayton, Ohio tomorrow with my husband. Don't know if I will make

it up there, but I am going to give it the " old college try " !

Hugs,

Biddy

PSC statistics

HI Biddy-

Hope you're feeling OK today. Noticed a couple of points on your recent

e-mails that I think might need to be clarified. PSC is considered rare in

both males and females, though it is about twice as likely to occur in

males. I believe the overall occurrence of PSC is something like 3 per

100,000 people vs Hepatitis C which is expected to effect more than 1 in 100

people, so there are something like 4,000 people with PSC in the US and 4

MILLION Hep C people (about 1000 times more) --numbers are approximate

only.

It is my understanding that PSC and PBC patients are among the more

successful groups of transplantees. Dr. LaRusso at Mayo clinic said that

PSC may re-occur in about 20% of transplantees, it tends to be slowly

progressing if it does occur, unlike the Hepatitis alphabet infections,

which re-occur with more frequency and tend to be more aggressive after

transplant.

Re: Smoking-it can increase the risk of bile duct cancer in PSC people per

the Drs at Mayo. Since the incidence is close to 10% for PSC over-all,

smoking isn't too good a gamble for us. Bile duct cancer is apparently very

difficult to treat successfully and of course, can pre-clude a transplant.

We've got to look at the bright side here, and focus on the things that we

CAN do something about. I think that Penny, and are on to

something really constructive with the awareness programs. Did you say you

have journalism experience? That could be a very useful skill in this

effort.

Take Care,

H.

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