20 yr old son just diagnosed with PSC

[Guest guest]

He is a 100 % fit University student, showing no symptoms whatsoever,

only found abnormal liver function in routine tests.

Are there any other mothers out there who can offer me some hope, any

really positive stories?

I am still in shock after hearing this devastating news.

[Guest guest]

Angelinapink,

So sorry you

have reason to find us, but you will find this to be a wonderful group. Take

it in slowly. I know it is tough. Unfortunately, it has nothing to

do with fitness level. We have people here who are avid bikers and are

just amazing physically. That being said you should also have a great

deal of hope. This is a slowly progressing disease in most cases and

people function at high levels for longer times than I ever imagined. My

son is 8, and while the first year of diagnosis was awful and he was unable to

run outside and play. Now he is back to being a normal (although cautious)

kid playing with his buddy and wading in the creek catching crayfish and the

like.

Get informed so

you can get the right treatment course for your son, and after that enjoy life…

Come here for

support…ask questions…make friends…everyone here is

marvelous.

Again welcome,

Mom of Zoe (13) My very normal (teenager normal) soccer player;

Noah (8) Indeterminate colitis, PSC, Osteopenia (1-4 lumbar

vertebrae);

Aidan (4 1/2) Moderately-severe SNHL bilaterally

Recycle

Yourself

Become an

Organ Donor

[Guest guest]

>

> I am still in shock after hearing this devastating news.

>

I am a wife of a PSCer. My husband, in his early 20's, was diagnosed

with this disease along with dealing with a bad case of UC. At the

time of his PSC diagnosis he had gone through a complete colonectomy

because of his UC, through the VA (US military hospital). This was

around 1994. The only issue with how things happened with him is he

was not well educated concerning this disease. He was symptom free

for 11 years, and has lived a " normal " life up to that point.

Even though the news can be devastating, you need to focus on the

fact that his health be so good today. Also educate yourself about

this disease so you can help him make the best possible choices.

Side note, get him a good life insurance policy, since he is young,

do it. At this point that is one of the most frustrating part of our

situation. We only have what his company offers which doesn't cover

all that we would need if this goes bad, and this worries him.

You have also come to a good place for support! Welcome.