PSC Patient Conferences

Each year in the spring, PSC Partners holds a conference for patients and caregivers that is co-sponsored by a major medical institution. Conferences allow patients, caregivers, physicians, and researchers to meet and discuss PSC diagnosis, treatment, and research. There is ample time to network with speakers and fellow PSCers. It's also a time to have fun, share some PSC humor, and make new friends. Past conferences have been held in Denver, Pittsburgh, Jacksonville, and Chicago.

Many who attend say the friends they made and the information they received changed the way they think about their disease and how they manage it. For first-timers, the ability to meet other PSCers is an inspiring experience. They gain confidence knowing that others manage the disease and that there is hope for them.

Following each conference specific conference websites are available that cover the presentations and make the information available for those who want to reference it and for those who could not attend.

Click here for information on upcoming patient conferences.
Click here for information on past patient conferences.

Personal Story

The Top Ten* Reasons to Attend a PSC Partners Conference

Everywhere I look lately, it’s all about lists. There are books about making lists on the bestseller list (which further proves my point.). Commercials on TV remind me not to miss Dave’s Top 10 list. Even the memo pad on my fridge begins with the words “Things to Do:” followed by a series of blank lines and numbers. So, although I usually dedicate this column to the worries, woes and triumphs of the 20s/30s set, I give in. I got the message. With no further ado, here it is: The PSCers (20s/30s) Top 10* Reasons to Attend a PSC Partners Conference

1. Know you’re not alone

So, the doc says, “Surprise, you have PSC. It’s this rare, incurable...” and, well, there were probably more words but you were too stunned to hear them. Since that time, if you’re lucky, you’ve met other PSCers, connected at PSC Partners support groups and attended some or all of our conferences. If you’re not that lucky, good news is it’s an easy change to make! Isolation is one of the worst parts of having a rare, chronic illness that even doctors have to ask you to repeat the name of, let alone your closest friends and family members. It can be incredibly hard to be the only one in a group with constant itching or the sound of sand running through an hourglass whooshing in your ear. Too many of us feel all alone and are stuck having to wonder if what we go through is normal. Do we know all the facts? Does our doctor know all the facts? What does PSC mean for my life and my future? One of the most amazing things about a PSC Partners Conference is finding out just how not all alone you are.

2. Experience the joy and hope

You’d think that a conference all about PSC would be at best heartbreaking and depressing and at worst invoke heretofore undiscovered suicidal tendencies. The truth is nothing could be further from the truth! Yes, it’s a conference about a rare disease with which we all suffer. Experts go over the latest news in research and education. We hear some tough stuff. There are moments where tears are not out of line. However, mostly, those tears are running down your face from laughing so hard you start to worry about peeing your pants again like when your best pal shot chocolate milk out of her nose in elementary school. Don’t ask me how we manage it, but the three most prevalent things in any PSC Partners conference are joy, hope and laughter.

3. Become informed

The internet is full of scary “facts” as are, sadly, some physicians woefully unfamiliar with PSC. First and foremost, PSC is not a death sentence completely devoid of any hope. Not only will you hear from experts in different fields about the latest in PSC research, education and awareness, you’ll actually be in a room with PSCers who are living happy, normal (or at least relatively normal) lives. You’ll see firsthand that PSC doesn’t mean Person Scared Constantly and that alone is worth the price of admission!

4. Be a part of the “in” crowd

In our daily lives, we’re the other. We’re the ones with the ticking time bomb in our livers, the need to go to bed before most 9 year olds we know, the ones who stutter when asked how we are and have to debate whether the question is sincere or merely perfunctory and wonder if the person asking could even handle the truth. At a PSC Partners conference though, we’re the normal. Those caregivers and siblings and friends, they’re the ones out of the ordinary. I mean, not taking a single medication? How odd! Eating without pondering what it means to their systems? Not having to know where the nearest bathroom is at all times? Completely peculiar! In fact, some of our caregiver attendees in the past have been so jealous that they’re not at the popular kids’ table, they’ve even coined themselves a phrase.We might be the PSCers, but they’re the PSCEers*. A little sick (no pun intended), yes. Funny and kind of fab to be in the envied group even just for a bit...well, heck yeah!

5. Scratch, itch, nap in peace

Have you ever been sitting in a classroom or a meeting or a dinner party or anywhere and simply dying to scratch yourself...and I don’t mean a quick ten-second thing, but a full-on make like a bear and rub against a tree to relive the itch kind of a thing? Well, at work you’re bound to freak people out. In class, they’d definitely notice. At the movies, they’re calling security and at a dinner party, well, let’s just say nobody’s going to be wanting to hug you goodnight or invite you back.

At a PSC conference though, you can itch and scratch and do so right out in the open without a single bit of self-consciousness. Embarrassed that you always seem to itch in non-public appropriate places (such as armpits, chest, um, God-given goodies), not only can you complain about it out loud, you’ll find you’re not the only one, and maybe even learn a covert method or two for scratching there without attracting notice. Caveat: Never ever do those things on a first date or a job interview if at all possible!

Need a nap to make it through a day? Want to go to bed at 7 p.m.? Well, go right ahead. No judgments here. In fact, we’ve long talked about the fact that pajamas as a daily-living requirement should be totally accepted (and not just by high-school cheerleaders). In fact, a pal and I even created a group for it: NAPS* Don’t you sometimes think life would be so much less complicated if you were already in your jammies when the exhaustion hits?

6. Make lifelong friends

A PSCer pal of mine once told me that she feels that our conferences are like getting together with your very best friends--albeit the ones you might only get to actually see once a year. I can totally relate to that. There’s no need to hide anything at these conferences. Seriously, you will NEVER find a more accepting group of people. Even things you’re afraid to admit out loud to yourself are perfectly acceptable to bring up at the conference.

Not only will you most likely find that you’re not the only one with whatever the particular issue is, but probably, you’ll find commiseration and perhaps even some laughter and help to go along with it. Nothing is off limits for us. Want to discuss why your stools float, go for it. Want to complain that your gas or burps smell like rotten eggs, we’ve heard it before. Want to know if anyone else has to cut every single tag out of every piece of clothing they own just to get some itch relief? Well, I’ll bet you dollars to donuts you find at least 30 people who are on board with that!

Further, bonds created at the conference last. We may not get to see each other physically very often since we come from, literally, all over the world, although occasionally just down the block as well, but we Skype. We chat and text. We FB. Our bonds are strengthened and lifelong. We can talk about PSC symptoms as easily as we talk about True Blood or our sad but unending love for Buffy the Vampire Slayer (despite having ended years ago) or Glee or how Thai food is so much better than Chinese. We can go for months without talking and still know 100 percent that our PSC pals love us and have our backs and vice versa. Where else can you walk into a room feeling perhaps a little uncomfortable or a lot nervous and be pretty darn assured that you’ll come out with friends for life?

7. Get practical tips to improve your daily life

Got a question? Chances are, we’ve got an answer. Want to know if sweating or acne can be a part of PSC? (Unfortunately, yes.) Even better, want to know what other PSCers have tried and found either to work or not work? No problem, we’re there to share. Think your medical team gave you bad advice? Ask if anyone else has heard the same thing and/or how they were able to talk to their doctors to make things better. Learn about different diets and lotions and medications and whatnot that make a daily difference in the lives of so many of us. Feel like you can’t date or join your pals at a club because it’s awkward to answer “what do you do” questions or be the only one not drinking? Wondering how others told their kids, bosses, pals, prospective life partners, etc., about PSC. Well, the answers are all just a conference away.

8. Find the meaning: Learn how to make a difference in your own life and other PSCers’ lives if you so choose

Ever wonder “why me?” Want to know what you can do to further the cause? Want to find out how easy it is to hold a fundraiser to raise awareness and money towards a cure and better treatments? Want to have complete and total proof that you’re not all alone in this? If you answered yes to even one of those questions, you guessed it, the conference is the place for you!

9. To be with people of your own age who like to, want to, or have to . . .

Well, you name it: Party, drink, date, be intimate/romantic, wonder about fertility, worry about what PSC means for procreation, figure out how to tell someone, wonder if children can be a part of their future, want to know when not telling crosses the line from privacy to deceit. Is taking a drink really endangering your life and liver with every sip? Can you drink wine but not beer? Is a little blue pill in your future? Can female PSCers get pregnant and carry to term? Can we still feel attractive and deserving of love and marriage? Are we lying if we don’t tell our bosses what’s going on or mention it on a job interview when asked if we have anything we’d like to say or what our weakest points are?

The point is you’ll be in a room with people who worry and wonder about those same exact things. Instead of getting one view from one person, you can get 20 different views; you can find one that makes sense to you. You can have your fears allayed. And, well, for those of you who are single and looking, can I just say that we really are an extraordinarily attractive group of people!

10. Put an actual face to all your FB friends

Come on, admit it. You’re really curious about some of your FB PSC pals. What better chance than this to actually check them out and see what they’re really all about!

11. To allow your parents or caretakers to talk with other people similarly situated so they don't keep asking you the same questions or saying "I don't understand" or look at you like you’re nutso or seriously disturbed when you say you’d cut your own feet off to stop the itch?

We all know it, the pitying look we get from our friends and loved ones (and sometimes complete strangers in the grocery line or church or wherever), that look that makes you want to scream. We try to describe what it’s like to live with PSC to our friends and family but realize that they’ll never be able to understand, even with the spoon theory.* I’m more than a little ashamed to say I’ve broken out into a full-blown tantrum when my father, thinking he’s being helpful, asks me to rate my pain on a scale of 1 to 10. I know another PSCer who says he simply can’t get a day free of his mother asking him if he pooped and what color it was and whether or not blood was present. I’ve also got to say that I feel enormous guilt at times about the stress and strain my illness has put on my family and friends. I worry they spend all their time worrying about and taking care of me and forget to replenish and spoil themselves. I’m scared they live in denial. I’m impatient when they don’t know a medical term that’s second nature to me (because we all know that PSC comes with a whole new vocabulary, free of charge).

The thing is I’ll never know what it’s like to be a caretaker of a PSCer, at least, I sure hope not. Our parents, sisters, brothers, lovers, pals, relatives, etc., are dealing with watching us go through something where they can’t really tangibly help at the end of the day. They can’t make our livers behave or our pain disappear. They can’t stop the vomiting or help us think straight when encephalopathy sets in. They can’t, much as they would like to, have our transplants and treatments and ERCPs and the like for us. They need to talk about this. They need somebody else to reach out and hold their hand and tell them they get it, and really, truly know that they each know what the other is going through.

It’s not just the PSCer that is oftentimes isolated by the disease. It’s all those who love us. The conference is a great gift to them to be able to find support and to hear the truth and experience the feeling of being in a room full of PSCers who are so much more focused on laughter, joy, friendship and hugging than death and dying. They need to be able to look into each other’s eyes and cry and feel what they feel without worrying about putting too much on us. We need to give them that gift, not only for them, but for ourselves too.

12. To see who can make up the most memorable and useful phrases using only the letters "PSC" 

Okay. I’ll admit, this might not seem like a reason to come to a conference, but that’s only because you don’t understand how delightfully fun and distracting this game can be. Go on, give it a try; you know you’re dying to give it a go! Here are some of my favorites from years past (some mine, some belonged to others, and those of you who they belonged to, sorry if I don’t give you name credit, but I truly can’t remember anymore at this point who said what.)

Pee Speed Champion--this one was attributed to our own PSC Partners’ President by one of the funniest and most fabulous ladies you all will ever meet who happened to be in a stall next to our fearless leader one conference afternoon. (Seriously, meeting Sheller and Ricky and Don and the rest of the gang should count as a reason to attend the conference; you’ll get it once you get to know them!).

In any case, the list continues: Princesses Sleeping Contentedly, Please Send Cure, Pretty Suave Chicos, Please Send Chocolate, Pretty Scary Concentration, Patient Spending Club, Peas Sauerkraut Chicken--I’ll admit this one makes no sense to me, but I love how if you say it with the right intonation it sorta sounds like a curse! :)

Anyhow, you all get the idea.

13. To better realize that having PSC does not mean that your life is over, but instead offers you the opportunity to explore alternative choices

Less than ten years ago, I’d have never guessed that I’d be living a life where I’d be listed as permanently disabled and be unable to work, where driving a car is only a distant memory and that I would have my own shelf in my local pharmacy.

Less than ten years ago, I was worried about whether my boss liked me, if I looked fat in things and what strangers on the subway were thinking when they saw me (and why they felt it was okay to touch me in places even past loves hadn’t ventured). I presumed my friends and confidantes would be there for me come what may and that nothing could shake those bonds of friendship.

Then, I got sick. I lost my job. Many of those “forever” friends wrote me off and haven’t talked to me since, because of fear or lack of interest, I’ll never know. I was feeling miserable, truly miserable and useless and like I didn’t have a purpose in the world.

Basically, I was counting breaths until it was time to die. I wasn’t actively pursuing death, mind you, just figuring it was quick on its way thanks to the ruins of all the things I thought I might have become.

These days, I get accused of thinking the glass is so full that it’s slopping over the sides and that it’s the size of a 10-gallon rain barrel. Pollyanna* has nothing on me. It’s not that I don’t get down or blue, er, yellow, I guess is more accurate for us. It’s that I’m able to see the forest for the trees. And I’m guessing you’ll think this is clichéd, but want to know why I’m largely sunshine and pink tulips? You guessed it, I went to a PSC Partners conference.

I’ll tell you the truth. I didn’t want to go. I couldn’t stand the thought of being stuck in a room with a bunch of sick people and talking nonstop about feeling terrible and all the rest. I wanted to hide under the covers and cry. Instead, I got out of the car and ran into Ricky and Don Safer about one minute after I arrived. Ricky’s the PSCer, but there she was practically sparkling with warmth and radiation and buzzing with energy. Don had a mischievous twinkle in his eye and a hug and a grin that made me instantly feel safe and part of a family. I was still wary, but less so.

As the weekend wore on, I realized that warmth and sharing and frivolity made the hard stuff easier to bear and by the end of my time there, I truly had made lifelong friends and found a new purpose to my heretofore meaningless days.

I was part of something. I am a part of the PSC family. I’m part of an organization whose sole purpose is to have nothing left to fight for. We won’t quit until we’ve cured PSC and made sure no PSCer ever feels isolated and alone again unless they so choose. We’ll fight together, whatever it takes until the need for us is absolutely obsolete.

I tell everyone that attending the conferences is a game changer in the best possible way. I can. I know it to be true. I know it’ll be true for you, too.

Footnotes:

Per Sandi’s Count: A system where the actual mathematical equivalent is irrelevant to the amount of words and topic headings posted.

* PSCE: A made-up condition for the well-meaning friends and family of PSCers. PSCE can either stand for Primary Sclerosing Cholangitis Envy or Primary Sclerosing Cholangitis Empathy. (Ex: A PSCEr will claim PSCE when exhausted and needing a nap or whenever they itch.)

NAPS: National Association of Pajamaniacs, a ridiculous group started just for fun and to spread my mission that Thanksgiving should be a pajamas-required holiday. Come on, think about it, it really does make absolutely perfect sense, right? Find NAPS at:
http://www.facebook.com/group.php?gid=51621655217

The Spoon Theory: A practical and easy to understand description of some of what life is like for the chronically ill. 
 http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

Pollyanna: A movie starring Haley Mills (if you don’t know who she is, don’t tell me, it’ll break my heart! Oh, and go rent the original Parent Trap immediately!) as a young girl who is exceedingly optimistic no matter what’s going on around her.

To register for this year’s conference and join the fun, go to: http://www.pscpartners.org/nextannual. We can’t wait to see you there! :)

Sandi P.