Hi, I'm new to this group.

[Guest guest]

Hi, My name is Margaret and I have PSC. Was diagnosed

in fall of 98 and feel fine. I had UC all my life,

from 64-85, when I had my colon removed and met my new

friend for life, Mr Ileostomy. We've been great buds,

with only a few squabbles.

In 1998, after my brother developed liver cancer, did

the doc find out he also had PSC. He strongly

suggested I get tested, (thru the wonderfuld ERCP, and

yes, I did have it. I take Actigall regularly and

still feel fine, most of the time. My brother lost

his battle. He was only 54. With his passing, the

entire family, his children, grandchildren, my

children, grandchildren, will know to be aware of

this disease, and get tested early, for a base line.

My doctor has been trying to get me to get checked

for Crohn's, and I just did, yesterday, and no

Crohn's. Before I went for the test, I was Gogglin'

the website came up. This is great. I'm glad I found

it. It's too late for this year, but I will

definitely keep in touch for the conference next year.

It's nice to know there are others out there. After

reading some of these e-mails, it's shocking to me

that children are affected. We all need to make

people aware of this disease.

Keep in touch, folks.

Margaret

[Guest guest]

Dear Margaret,

Welcome to the group. I " m so sorry about your brother. I'm sorry too

that you also have PSC but I'm glad that you have found our support

group. The folks here are great with timely advice and support.

I'm sorry you can't make the conference this year. Next year it will

be in Denver.

In the meantime you can find a lot more information on our Partners

Seeking a Cure website.

www.pscpartners.org.

There are links to all kinds of information.

It is shocking how many children and young adults are affected. My

son was a college junior when he was diagnosed and since then he too

has had his colon removed because of the UC.

There are lots of ways you can help us spread awareness of PSC, just

check out some of the links on the Partners website.

If you have any questions, ask away.

Lee

> Hi, My name is Margaret and I have PSC. Was diagnosed

> in fall of 98 and feel fine. I had UC all my life,

> from 64-85, when I had my colon removed and met my new

> friend for life, Mr Ileostomy. We've been great buds,

> with only a few squabbles.

> In 1998, after my brother developed liver cancer, did

> the doc find out he also had PSC. He strongly

> suggested I get tested, (thru the wonderfuld ERCP, and

> yes, I did have it. I take Actigall regularly and

> still feel fine, most of the time.

[Guest guest]

Welcome

Margaret.

I am so sorry

about your brother. Your situation makes me even more inclined to screen my

other little guy (Aidan 4-years-old), so we might catch anything early.

Unfortunately, they have their whole lives for this thing to turn into cancer

and that scares the begebers out of me.

It is so good

that you are feeling well. How are your bloods looking? Noah’s are “normal”

at this point after being put on URSO, Imuran, Asacol, etc for the PSC and indeterminate

colitis.

All the best,

Mom of Noah (8)

UC 3/05; PSC 5/05; osteopenia 8/05 (LV

1-4)