PSC Partners Seeking a Cure holds a conference in the spring of each year in conjunction with a major medical center. Usually held in April or early May, the conference draws patients and caregivers (spouses, partners, parents, siblings, and friends of PSC patients) to learn about the latest research on treatments, medications, procedures, and the disease’s outlook. There are support and discussion sessions with physicians and with other attendees.
Speakers at our conferences are leaders in the PSC world and they come from the US as well as international PSC treatment and research centers.
Time is also set aside for fun and entertainment. Many participants say the conference is life changing. Friendships are forged and attendees go back home with renewed energy to cope with PSC, both medically and emotionally.
Conference content from our eight previous conferences is online at this site, under the Previous Annual Conferences tab. Our newsletter, The Duct, also covers the conference in detail, generally in the Summer issue. Click here to go to the newsletter page.
Here are some comments from our 2012 post conference evaluations:
Even if You Fall Asleep
By Matthew A
After attending the 2012 PSC Partners conference, I have nothing but great things to say. It was my first year attending the conference. As my parents were there in 2011, they assured me that I would have great time. Despite being skeptical, I figured that at the very least I would learn a lot even if I didn't enjoy myself. In the end, my parents could not have been more right!
Why was the conference so great? Well, the conference is a place where even if you fall asleep during one of the speaker presentations, which I did ... oops, people understand. It's a place where no one asks you, "Why are your eyes yellow?" or "Why do you itch so much?" Furthermore, you learn so much throughout the conferences, and the information comes from everyone. For instance, I heard how different people dealt with certain aspects and symptoms of PSC. I also learned a great deal of technical information from Mayo doctors - how to interpret blood tests and about medication.
Despite all that I learned about PSC, the best part of the conference for me by far was meeting all the amazing people. Everyone was so fun loving and nice that it almost seemed too good to be true. On top of being super informative, I found the conference really therapeutic. As an eighteen-year-old, it was great to share and discuss with other young adults of my age what my last ERCP or liver biopsy was like.
If I can leave you with a thought, it's this one: I left the conference feeling many emotions. Above all, I left happy. The whole weekend made me feel as if I had left behind all my worries even though I was facing them straight in the face. I was also sad, sad that it was over so quickly. I guess time flies when every minute is meaningful and fun. Finally, I was excited. I was excited to go home and tell my doctors everything I'd learned. Most of all, I was, and still am, excited for the next PSC Partners conference in Pittsburgh. It will be great to see everyone again, and I really hope to see you there too!
I Found My People
by Ruth B (South Africa)
So ... when sitting down to write about the conference, I thought to myself, if I could think of a single word to describe the 2012 PSC conference, what would it be? It took about three seconds - FAMILY.
In one weekend, I met the family I never knew I had. I walked into a room of people who all spoke the same language as me (PSC). Everyone had the same worries, same heartache, same frustration, fear, anxiety, hope, anger, determination and unwavering mission.
When Dylan was first diagnosed in 2007, my whole world fell apart. I was scared and alone. His doctor was a very knowledgeable woman but was unapproachable. I tried to find out as much as I could and be as informed as possible. The information available on the Internet was insufficient and overwhelming.
I started to ask questions. Why was he on this medication, what did this blood test mean, why is he so tired, is this itching normal, can he take pain killers if he has a headache, what about medication for the common cold? I had so many questions and no one could really answer me.
Our pediatrician said that he could no longer help us; even a cold took on major dimensions; what started as a minor break in his arm ended up in a cholangitis attack, and no one was sure about anything. No one had any answers.
I was frustrated and angry. I wanted more. More answers, more advice, more people who understood what this disease was about, more information, more options, more hope. That was when I decided to attend the conference. I needed help.
I still remember when I first walked into the room at the conference. I was enveloped in welcome. Everyone was so excited to meet me and so pleased I was there. I have never felt so comfortable so fast amongst a group of strangers.
I had found my people. I could ask anyone questions and get such great advice and support. I was able to share my story without sounding dramatic. I met other moms who knew what I was feeling.
Every aspect of the conference was fantastic, from the wonderful coffee, to the incredible speakers that gave of their time and knowledge. I found out about medications I had never heard of before. I got tips on how to give liquid medication. I found out about some supplements and vitamins. I learnt how to read my son's blood tests and what to look out for. I got tips on how to give liquid medication. I found out about some supplements and vitamins. I learnt how to read my son's blood tests and what to look out for. I got information on the variety of different scans and procedures for checking PSC and the ones that were best to use in different situations. I made contact with a variety of specialists and professionals who gave me great advice on international medical care and on how to proceed. I finally feel I am steering this ship rather than being a passenger on a very scary drive.
I walked away from the conference with a course of action in my head. I feel I have some sort of direction to go in and more confidence to insist on what I want for Dylan and what I think he needs. I have more knowledge about what direction to take and what care is available. I can already see that I am able to make better-informed decisions.
Thank you to everyone, firstly for the amount of work that went into the conference, secondly, for the care and respect that was given to everyone, and thirdly for your understanding and for giving of yourselves.
The weekend was amazing and overwhelming. I felt joy, love, confusion and fear, panic and confidence, hope, strength and power, courage and knowledge. But most of all? ... I felt FAMILY.
It wasn't the presentations from medical professionals, or the breakout sessions, or the beautiful accommodations. They were all great.
Something else goes on with this group every year . . . much more than the joy that comes from renewing old friendships and seeing people whom we haven't seen since the last conference. It’s something that I can't easily describe.
Some wonderful spirit that comes from knowing that everyone else present, whether a patient or caregiver, is in the battle of their lives. Put aside the politics of health care reform, a phrase never uttered within earshot of me all weekend. Forget about the academic debates as to the true cause of PSC and which treatment appears to be the most promising.
Yes, we were all there to learn, but we got so much more than book knowledge. I think one of the prime goals of every PSC patient is to just be normal. Sure we try to hide things and are all experts at disguising the fatigue, itching, GI problems, or replying to the "You don't look sick" comments. We know we're not normal now, and deep down we know that even after transplant, we're not normal and never will be, at least not in the way that society defines the term. It's quite a lonely feeling, and it's no wonder so many of us are treated for depression.
But when we're together, everyone is fighting the same enemy, everyone has similar issues, and so with over 200 people in the room, we actually are normal, if for but a weekend. Frankly I was feeling pretty crummy every day of the conference. The fatigue was crushing, I had little appetite, and it was tough to get out of bed each morning. Kathy was convinced I was going to pass out at any moment, poor thing! And so many people who read my blog and who were in attendance already knew that I was struggling and offered to help me with whatever my heart desired.
I met so many wonderful people who were at their first conference, just recently diagnosed, fearful, and who came away knowing that there are others out there fighting, too. Hope is there, and being together as a group is, well, a real damn great time. To me, there is nothing better than the dozens of hugs and heartfelt expressions of care and friendship among everyone in attendance. I don't know how one could attend and not come away with faith restored and with new friends that will be there for life.
You see the other reason people go to the PSC Partners conference is to restore hope. To see that people can have great lives while they're fighting this war. That people actually do get through transplants and go on to being energetic again, and in my case, more fit and better looking than ever before.
This was Kathy's first conference, and I'm so grateful that she finally had the opportunity to go with me. Even when we got lost around New York and I took it all in stride, she remarked at how calm and peaceful I was. That was because I knew that we were bound for an experience that would be great for both of us, and nothing would put a damper on what we were about to experience hand in hand, side by side. Yes, she'll go next year with me, and I'm already pricing flights to Sacramento for us.
Sure, all weekend I was still sick and going through the normal recovery that comes from those periodic, rare, mysterious flare-ups of something unknown. But who doesn't get sick sometimes? All it took was a greeting from my old buddy Tim from North Carolina, or seeing my best transplant friend, Dave, again, and the cares and symptoms were dismissed from the table.
This group had that special spirit when it was small, and it's amazing that it has an even stronger passion and energy now in a group of over 200 attendees. That's a congratulations to Ricky Safer, the founder of PSC Partners, and also to too many other names to mention here who share that vision of being together in the fight, whatever it takes.
I finally started feeling better yesterday. I've actually worked two full days in a row, and I'm rapidly becoming more of a helper and less of a burden again to Jacqui. And I'm not asleep on the sofa ready for bed when Kathy gets home from work. The joy is back, aided in part by a group of people that will always hold a special place inside this old heart.
To read a light-hearted list of why you should attend an annual conference, click here.