New Member - My son was just recently diagnosed and I'm lost.

Posted June 18, 2008 · June 18, 2008

My son, 17, was diagnosed with UC in March. Last week he saw a

specialist and was told he has PSC. I'm still in shock but need to

know more about this disease. Right now he feels fine. What should I

expect and prepare for?

Thank you for your help,

Arlene

Posted June 18, 2008 · June 18, 2008

I'm sure you'll hear a lot more shortly, but:

Start with the FAQs at http://www.psc-literature.org/FAQ.htm

Take a look at the brochure at http://www.pscpartners.org/PSCBrochure.pdf

Write down your questions for the next Dr. visit.

PSC is widely variable in patients. Some have had PSC for 30+ years with mild (if any) symptoms. Some have one or two episodes and are symptom free for 10s of years. Some have had PSC for less than a year and have a liver transplant.

My favorite quote from one of the leading researchers is " You're more likely to die with PSC than from PSC " .

Hang in there - diagnosis time is pretty rough (and we're very rough on our caregivers, bless them!). Keep on asking questions; someone here will have an answer!

Arne

57 - UC 1977 - PSC 2000

Alive and well in Minnesota

(I also feel fine, mostly)

________________________________

From: [mailto: ] On Behalf Of arlmc

My son, 17, was diagnosed with UC in March. Last week he saw a

specialist and was told he has PSC. I'm still in shock but need to

know more about this disease. Right now he feels fine. What should I

expect and prepare for?

Thank you for your help,

Arlene

Posted June 19, 2008 · June 19, 2008

Arlene,

My heart goes out to you. I know how you feel, it is so scary and

uncertain!! I was only diagnosed a few weeks ago. I can't imagine how

my mom feels. I'm a mother myself so I can only imagine how scary it

is!! This group has been very helpful so that I don't feel so alone

and isolated.

If he feels fine right now, that's great news.

Based on soul searching and many conversations with thoughtful

people, I'm currently at a place where I'm focusing on the present.

I'm trying to live out my life according to my values every single

day, because it could be my last. That's true for everyone, but the

experience of being diagnosed has brought me out of the denial most

people live in about the uncertainty of the future. So my advice to

you and your son is to try to make the present as meaningful as

possible. Don't put anything off. There is so much about life to love

and live and enjoy, our time is best spent living to the fullest. Of

course it's hard not to worry (I have a hard time falling asleep),

but I'm told we'll get used to living with the uncertainty.

Please keep us posted about how you and your son are doing.

Ruth

UC - 2000, Colectomy - 2007, PSC - 2008

>

> I'm sure you'll hear a lot more shortly, but:

>

> Start with the FAQs at http://www.psc-literature.org/FAQ.htm

> Take a look at the brochure at

http://www.pscpartners.org/PSCBrochure.pdf

> Write down your questions for the next Dr. visit.

>

> PSC is widely variable in patients. Some have had PSC for 30+

years with

> mild (if any) symptoms. Some have one or two episodes and are

symptom free

> for 10s of years. Some have had PSC for less than a year and have

a liver

> transplant.

>

> My favorite quote from one of the leading researchers is " You're

more likely

> to die with PSC than from PSC " .

>

> Hang in there - diagnosis time is pretty rough (and we're very

rough on our

> caregivers, bless them!). Keep on asking questions; someone here

will have

> an answer!

>

> Arne

> 57 - UC 1977 - PSC 2000

> Alive and well in Minnesota

> (I also feel fine, mostly)

>

> ________________________________

>

> From: [mailto:psc-

support ] On

> Behalf Of arlmc

>

> My son, 17, was diagnosed with UC in March. Last week he saw a

> specialist and was told he has PSC. I'm still in shock but need to

> know more about this disease. Right now he feels fine. What should I

> expect and prepare for?

>

> Thank you for your help,

> Arlene

>

Posted June 19, 2008 · June 19, 2008