Re: New to this!/ nykelly2000@...

[Guest guest]

,

Hi! Welcome to the group. I'm glad you found us. One of the scariest

parts of having PSC is feeling all alone out there in the world and that is one

thing you definitely won't have to worry about now that you've found us!

I think some others have already mentioned it, but please feel free to ask any

questions that you have. As you probably already know, PSC is incredibly

different for each patient and there's no standard correct answer to most of our

symptoms, etc. However, chances are that if you have a question, someone else

on this board will probably have an answer or can at least commiserate with you

having been through the same thing. I can't even count how many times members of

this group have answered my questions, cheered my spirits or just helped me to

have a better day.

I don't know if you'd be interested or not, but I also wanted to let you know

that in addition to this site, we also have a PSC Facebook site that is

dedicated to PSCers in their 20s and 30s and thereabouts. We'd love to have you

join. It's a great place for asking questions, giving advice, sharing

information and making connections. If you don't already have a Facebook

account, it's easy and free to set one up. Just go to www.Facebook.com and

follow the prompts. Once there, you can type in PSC Partners in the search box

and our group should pop right up. If that doesn't work for some reason, or you

want an easier way, just contact me (Sandi Pearlman) and I'll send you a link if

you're interested.

One last thing, if it's not too overwhelming and you'd like to meet some fellow

PSCers face to face and hear about the latest research, talk with some top

specialists, etc., we do have our 5th annual PSC Partners conference coming up

May 1-3 in Chicago. I can't even stress enough how helpful it can be to sit in

a room with a bunch of people who know exactly what you're going through! If

you'd like any more info, just let me know.

I'm sorry you had to be here, but glad you found us!

Sandi in VA

[Guest guest]

,

Hi! I hope your day is going well. I'm sorry it took me a few days to get back

to you. It's been one of those exhausting weeks where turning on the computer

felt like a Herculean task! In any case, I agree with you, you should be

out dancing with your husband and running in the park with your twins! How old

are they? (The twins I mean, not the husband!)

Unfortunately, without a Facebook account I can't send you the link to our

Facebook PSC group. Once you set up your account though, I can hook you right

up to it. You'll just need to " friend " me first so I can send the invite.

Here are the directions again if you need them: Just go to www.Facebook. com

and follow the prompts. Once there, you can type in PSC Partners in the search

box and our group should pop right up. If that doesn't work for some reason, or

you want an easier way, just contact me (Sandi Pearlman) and I'll send you the

link.

I'm so glad you found us. It's so nice to not feel all alone with this giant

PSC thing hanging over your head, you know?

Sandi in VA