Re: Introduction - new parent/

March 29, 2009

,

Hi! Welcome to the group and I'm sorry you need to be here, too. I'm so glad

to hear that you'll be attending the conference this year in Chicago. I can

only speak for myself, but I really do think you'll find it incredibly

informative as well as personally restorative. Sometimes just talking to

someone who gets exactly what you're going through can be such a positive

life-changing thing. I sure hope that's the case for you!

You mentioned that you're going to be sitting down to talk to your daughter over

spring break. I've been in the hospital so long at this point (not to mention

out of school) that my timing may be all screwy and spring break may well be

over. In any case, I just thought I'd let you know that if your daughter is

interested, we do have an online Facebook Support Group for PSCers in their

20s/30s (and around those ages) that she is more than welcome to join. It

sounds like you two are close and I'm positive you're giving her all the support

she could ask for, but if she'd like to talk to some others around her own age

and who are dealing with similar life problems (the struggling in school, how to

adjust to life when you're young and have PSC, what do you tell people, etc.),

you're more than welcome to let her know we're here. In order to find us, she'd

just need a Facebook account if she doesn't have one. It's free and easy to set

up. She then would

just need to type in PSC Partners Seeking A Cure into the search box and we

should pop right up. The boards give PSCers a place to talk, ask questions,

give answers, share concerns, etc. It's much like this group only with a bit of

a slant in its audience. In any case, we'd love to have her if she'd like to

join. She can also contact me (Sandi Pearlman) if she'd like to talk to another

female PSCer who's been through some of this.

Hope you all are having fantastic days! I'll look forward to meeting you at the

conference.

Sandi in VA/Rochester

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