Our Next Annual Conference

Our 2011 conference will take place April 29-May 1, 2011 at the Sheraton Grand in Sacramento, California in conjunction with Dr. Chris Bowlus and his colleagues at the University of California Davis.

Click here to view a slide show introducing our 2011 conference. When planning your trip to Sacramento, please click here for some of ideas of things to do in and around Sacramento.

Please save the date and plan on joining us for this special weekend. We’ll post more information as it becomes available. If you have any questions, send an email to Ricky at contactus@pscpartners.org Hoping to see you there!

Personal Stories

Once more with feeling: My return trip to a PSC Partners Seeking a Cure conference

The thing I love about life-altering experiences is that even when you expect them, they can still turn out to surprise you with the myriad of ways they can touch your heart.

I mean, I knew my first PSC Partners Conference had made me into a much-improved person from the shell-shocked PSCer who walked through the doors that first Friday afternoon. I’d been given confidence, a purpose, friendships that have stood the tests of time and frequent hospitalizations.

So, when Chicago rolled around, for months on end I proudly stepped forward and touted the glories of the conference to every prospective attendee for as long and as loud as I could. I figured I knew, so to speak, what I was getting into, what would await others. I mean, I was no longer a first timer.

I already knew about the warmth of the attendees, the staggering intellect of the speakers and PSCers combined, the sheer breadth of topics covered and even a good number of the people I would see. My goal for this year’s Chicago conference was to help make sure others got that life-changing experience and to sort of live it vicariously through them.

And then I arrived and realized that life changing isn’t just once in a lifetime and it’s not just for those who have never been a part of a PSC Partners Conference before.

Life-Changing

To be honest, I’m not sure when it hit me. It may have been when the first attendees started wandering the halls. It may have been as we were packing up and preparing goody bags to hand out. It doesn’t really matter. All that matters is that suddenly, I was at ease.

I felt relaxed and happy and whole. I wasn’t the sick girl in the room. I wasn’t the one people were whispering about with the rare incurable disease. I wasn’t even the only one exhausted and scratching and itching and forgetting my words before they could come out of my mouth.

I was just in a room with a bunch of people like me who were proudly wearing their blue dots (PSCers) and their yellow dots (caregivers) and their red dots (first-timers) and green ones (transplant) all declaring that we were members of the same group, of the same family—that we were the ones who belonged.

The conference was filled with well-credentialed speakers and researchers. Some of the news was grim and some was grand. But for me, the magic of the experience was the sheer number of us.

It seemed no matter where in the room you looked, there was another 20/30 something. We were there. We were listening. We were in this together. For those of us who knew each other before, seeing each other again was like seeing a family member whose presence you’d missed without realizing it until you saw their face. Sort of like having a part of you filled in when you hadn’t even realized you missed it.

One of my beautiful PSC pals said to me, "I feel like you’re all my best friends who I can share everything and anything with, even though I only get to see you once a year or so." And she’s right. Except I’d say that what we feel goes beyond friendship really, to sort of a more familial level.

There is such safety in the room, in that group of individuals. There’s no hiding of symptoms or exhaustion. There’s no embarrassment or accusation. There’s just overwhelming support and love and understanding. And the thing is, it isn’t limited. It’s not just blue dotters (PSCers) to blue dotters but also blue to red (first-timers) and blue to yellow (caregiver) or green (transplant) or whomever.

By the end of the first day, the dots didn’t matter. We were a PSC family old and new and all together. We’d known each other a year, ten years, ten minutes. It didn’t matter and it never would again.

Speakers

Some of what we heard at the conference was rough. Some speakers hammered us over and over again with the fact that many of us might likely die before we’d ever get a cadaveric donor. Some spoke about trials that we’d had our hearts and minds invested in as though they were somewhat laughable.

And some validated us. One speaker in particular spoke of the exhaustion that pervades so many of our lives and told us that exhaustion is real, that we’re not lazy. That exhaustion is mental, physical, emotional and pervasive. I know several 20s/30s who would have stood up and applauded at this, you know, had they not been so exhausted.

Another speaker spoke about SSDI and advocating for yourself and how FMLA can be your friend. At this, one 20/30 something pulled me aside and just said he felt as though he’d been given a new lease on life, that he actually saw that he wasn’t alone, that there was help. What could be bigger than that? And while he didn’t cry, I can tell you I came darn close to it!

Healing

But for most of us, no matter how fabulous the speakers are (and they are) or how many statistics and studies are named, the true healing and education comes not in the doctors’ speeches or through the painstakingly made presentations. No, those educate. Those give us food for thought. But those aren’t the true reason that the conference means what it does.

Quite simply, it’s the togetherness. Whether through breakout groups or just hanging out in hotel lobbies, the real miracle of the conference for all of us, at least in the 20s/30s group, is each other.

Breakouts

For those of you who weren’t present at the conference or who just couldn’t make this year, each conference offers a breakout session. More than one, actually, but we’ll leave that be for the moment. The 20s/30s breakouts were separated into 20s/30s males and 20s/30s females and while it broke my heart to leave all those handsome men in another room, those breakouts are breakthroughs.

The first day’s breakouts were Lunch with a Physician. The guys adored their session. The girls. Well, maybe not so much. But day two, when we once again resumed those breakouts, there wasn’t enough time in the day to talk, to laugh, to cry, to ask questions and share stories.

For the guys and girls alike, topics spanned the social front. For the men, drinking came into focus, the should you/shouldn’t you question. For the women, we talked a lot about fertility and family and what PSC meant for us in the traditional/societal sense of being a woman and in the physical sense as to what may or may not be possible given our PSC.

But both the 20s/30s men and women found themselves in similar circumstances as we discussed dating and how to tell someone and when to tell someone you have PSC. We talked about how fatigue affects work and friendships and, to some extent, self-esteem. We talked about medications and treatments we’ve tried. We talked and we talked and we talked. And had we not had to go back to the main room, who knows, we may have been talking still.

We asked questions of the 20s/30s siblings and caregivers who joined us. We mined their souls for clues as to how the “healthy” see us, to know what our diseases do to our loved ones and how we can help them or thank them for helping us. We talked as though there wasn’t a tomorrow coming because our tomorrows will come but we won’t be together. We’ll go back to being the sick man or woman in the room.

Our blue dot status won’t make us rock stars or one of the cool kids. It’ll be life as we knew it...only, life a little better than before. Because, see, for the 20s/30s and, I’m willing to bet, the group at large, the magic moments of the conference have less to do with location and hotels and doctors pedigrees and more to do with depth of understanding and compassion and unity.

Please stay close

See, for some, PSC might stand for Primary Sclerosing Cholangitis. For us, those of us in this wonderfully wacky, extensively varied and lovely and large family, PSC stands for Please Stay Close. As in, the bonds we made are not fleeting and we need each other come what may. For we are together in the fight, whatever it takes.

And to those of you who became a part of my PSC family this year or who came and renewed the bonds, I can’t thank you enough for strengthening me and for allowing me to give to you.

And for those of you who haven’t yet become a part of this fabulous family that no one wanted to be a part of and now couldn’t dream of being without, well, we’re waiting for you. We’ll set an extra chair at the table and keep all the good stories humming for when we see you at the next conference.

Sandi P.

(This article originally appeared in our organization’s newsletter in Summer, 2009.)