2014 Sjögren’s Syndrome National Patient Conference: Part One

I had been preparing for this year’s SSF National Patient Conference since last summer. I had been invited to speak on a patient panel and to do a book signing for Tales From the Dry Side, both of which I had been looking forward to. I had never done anything like this previously, and it promised to be quite an adventure.

My husband and I flew out to Chicago on April 24th so that we would have the 24th to do some sightseeing. The conference was being help April 25th and 26th, and then we would be flying home very early of the 27th. In this entry, I am going to focus on some of the technical aspects of the conference. I am doing this because I have come across quite a few people online who have wondered what the conferences are like and if it is worth the money for them to go. It can be a costly venture, especially if you need to fly in and because for many of us, resources are limited. I thought this entry might be helpful.

This year’s conference was held at the Hyatt Regency O’Hare in Rosemont, Illinois (Chicago). I thought it was a great place to have a conference for many reasons. For one, the subway station was less than ten minutes around the corner and gave you direct access into downtown Chicago. This is what my husband and I did on our first day there and it saved us a fortune in cab fares. It was our first time in Chicago and we were not disappointed. We spent many hours walking the streets downtown and ended up visiting Millenium Park and Navy Pier.

Beautiful Chicago!

I found the Hyatt staff, rooms, and conference area to be simply outstanding. The first night we were there, we came back from downtown before supper because I was exhausted and I still had two full days ahead of me. We ate at the hotel restaurant where I ordered GRASS-FED (yay!) hamburg and my entire meal was gluten-free/Paleo. The healthy food choices at this hotel amazed me. I also got a gluten/dairy-free meal during the conference for Friday night and Saturday lunch, both of which were delicious.

Tales from the Dry Side on the big screen!

I was also impressed with the organization of the SSF in setting up and orchestrating the conference. The following is an outline of the sessions that took place during the conference:

* Overview of Sjögren’s Syndrome: This was a very thorough history of the illness, as well as the diagnostic testing and available treatments. Little dry at times, but I think that was partly because I was well versed on all the information. Definitely a good primer though for those newly diagnosed.

* Pulmonary Issues and Sjögren’s: This lecture covered EVERY aspect of pulmonary issues in Sjögren’s. It was interesting and I think most valuable as many people go around for years with Sjögren’s related pulmonary issues and are dismissed or never treated appropriately.

*Gastrointestional Issues and Sjögren’s: Another excellent lecture. The highlight for me during this lecture was to see in print in my conference manual, and to hear Dr. Nichols speak about, esophageal motility disorders in Sjögren’s. Esophageal motility disorders can happen in up to 1/3 of us and they are related to the illness, despite that I was told by some doctors that mine was not. I am going to photocopy these pages from my manual and mail them to my doctor.

* How I Stood Up For Sjögren’s: Of course this was my favorite since I was a panelist! But all joking aside, I loved hearing the other panelist stories and I think that it opened up the door for other conference attendees to approach us and have discussions after the session. We basically told our Sjögren’s story and then talked about what we did to promote awareness; i.e. for me, publishing a book.

* Banquet Award Dinner: This was a dinner in which awards were presented by the SSF for numerous accomplishments. My favorite award was the one my rheumatologist, Dr. Ann Parke, received which was the Healthcare Leadership Award. After the awards, we heard the keynote speaker, Mary McDonough, who has Sjögren’s and lupus, give her speech She is an actress who played Erin Walton on The Waltons. I am about to start reading her book!

* Clinical Practice Guidelines Update: I will be honest. This was first thing in the morning and I thought it would be boring, My mistake; it was really good. Three different rheumatologists sat on a panel and talked about the three different clinical work groups they are heading. Each doctor talked about the different practice guidelines for systemic illness, oral illness, and ocular illness associated with Sjögren’s. They talked about different management algorithms and future investigations for treatment. Definitely information that we, as patients, can bring back to our doctors.

*Sjögren’s Walkabout: This was one of several Walkabouts that takes place in the country each year. Despite some less than stellar weather that weekend, it was perfect our for our Walkabout. It was nice to walk in solidarity with my husband and friends.Thank you again to everyone who donated to our funding campaign!

* The Next Chapter For Sjögren’s Patients: This session discussed what is in the future for the SSF and the illness. It was brief. OK, truth be told, it was brief for me because I was still out in the exhibit area signing books and didn’t make it back in time for the entire session.

* Overlapping Major Connective Tissues Diseases: There was a lot of information here. Because I knew I had an autoimmune illness long before I was diagnosed with one, I knew most of this information, but that being said, it was extremely valuable for patients. A lot of discussion about lupus, scleroderma,, and rheumatoid arthritis.

* Nutrition, Wellness, and Autoimmune Disease: I was VERY happy to see this included in the program. As you all know, I am a big advocate of nutrition and wellness for healing and it was good to see something included in the conference that was not based strictly on a medical model. If I had my way, next year’s conference will include more of this!

* What is in the Clinical Trial Pipeline?: I found this interesting. Different medication therapies were described as well as how clinical trials work. Dr. Ford was an excellent speaker and explained things in relatable terms.

As you can see, it was quite a busy two days! In between sessions and at the beginning of the day, and end of the day, the exhibit hall was open which is where the Tales From the Dry Side table was, along with an SSF book table and numerous vendors. I am in the process right now of trying the different products so I can review some of them online and I have to say, I am on to a few great ones I think!

It was truly a great conference and I am looking forward to writing the next installment this week which focuses on my personal experience at the conference. Stay tuned! Also, if you would like to view some photos that my husband took during our adventure, head on over to the Thoughts and Ramblings Facebook page where some are posted….

Busy signing books!

Photos: Courtesy of Chuck Myers at  myerscreativephotography.com

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