It seems like every conference or gathering I go to brings me new ideas and thoughts to raise more awareness of arthritis. The JA conference was no different.
Check in at the hotel was just a little bit busy, but that’s bound to happen when you have 1700+ people! 1100 of us were first-timers which is a big part of why they have the conference set up this way for next year…
How exciting is that?!
My first order of business was to run down and snag my swag bag before heading over to the young adult opening session.
The opening night dinner was the next event, and the last that I went to for the night even though there was a young adult networking session.
The opening dinner was great with plenty of gluten free foods. We heard from AF CEO Ann Palmer, JA conference chair for the year and SJIA mom Rochelle Lentini, and others. Probably my most favorite part of the night was when Ana Villafañe talked and performed for us.
One of the things that I loved about the whole conference was how much more of a focus on SJIA there seemed to be compared to past events. SJIA is rare, so I get that many may not feel it as prudent to discuss, but it was great. I say this because Ana has SJIA. Despite her illness issues, she’s debuting on BROADWAY in November in On Your Feet, a musical about Gloria Estefan and her family.
Instead of hitting the YA networking session, T and I hit the pool – something that surprisingly we hadn’t done all trip yet! It was a wonderful way to rest.
The next day started at nine with a panel of amazing people – Ana, Todd Peck (NASCAR driver), and juvenile/adult rheumatologist Dr. Sandra Pagnussat.
All three of these amazing people have fought hard to become who they are today. They each went through difficult periods in their lives and how they made it through.
One of the nice things about being in the YA category is that I could attend the sessions meant for parents and caregivers… even though they couldn’t attend our sessions. For the next few sessions of the day, I was able to pop out and enjoy some SJIA and very science driven sessions.
The first session I attended was on diseases like SJIA that are autoinflammatory in nature instead of autoimmune. Perhaps the biggest thing I learned in this session was that adolescent boys are more likely to have one SJIA flare and be done with it. If you have five years or more of active disease, it’s likely you will deal with it the rest of your life. The good thing, though, is that less than 50% of cases have severe or life-threatening complications… how sad is that what slightly less than half is good news?
Dr. Elder also talked a bit about Macrophage Activation Syndrome, or MAS, and how it often isn’t recognized right away due to the many diseases it mimics like hepatitis. It’s estimated that about 10% of SJIA patients will have overt MAS but that 30-40% will have symptoms of MAS without it being full blown. She explained the difference between autoinflammatory and autoimmune, which I hope to cover in a later post.
Interleukin (IL) 1 Beta, which Ilaris and Kineret treat, is responsible for many of the systemic features including rash. It’s also the major cytokine responsible for septic shock, which is what Kineret was first developed to treat but it failed to do so. IL-6 is responsible for maintaining many of the arthritic features including later osteoporosis and growth retardation. IL-18 is responsible for MAS and can possibly be used as a biomarker for SJIA in the future.
Something interesting that I found was that, in theory, you’re not supposed to consider a diagnosis of SJIA if the patient or his/her immediate family members have psoriasis. This is supposed to be consider Psoriatic Arthritis. I was a little shocked honestly, as I have psoriasis and SJIA, but Dr. Elder explained that there are outliers and both can exist in one patient. It’s just more rare because of the autoinflammatory and autoimmune differences. You don’t often see a person who has issues in both their innate and adaptive immune systems.
Novartis, the company that makes Ilaris, was kind enough to host a SJIA lunch Friday. I ended up at a table with the Sloan family and the Burgos family… whose little guy kept flirting with me throughout the rest of the conference.
I’ve developed baby fever Rafael!
I also was able to meet Leah Bush and Amanda Hendrix, two SJIA moms that I just LOVE. Honestly they’re a big part of why I blog and it was so nice to be able to give them some hugs and say hey.
The lunch itself was great. They displayed some amazing pictures from the Picture Your Best Day with SJIA project and talked about the new Know SJIA website as a joint venture between Novartis and the Arthritis Foundation. The website has some great resources including this handy SJIA symptom tracker.
The next parental session I crashed was Genetics 101 with Dr. Troy Torgerson from Seattle. It was more focused on the autoimmune side than the autoinflammatory side, but was very interesting. One of my favorite quotes from this presentation was “we’re all mutants.” There was something so comforting in knowing all of our DNA is messed up in different ways, and to have a pediatric rheumatologist who is also an immunologist kind of say that this doesn’t make us that different.
With me being a big of a science nerd, I LOVED this presentation. It was nice that I knew about some of it beforehand because it helped me to grasp some of the other issues he discussed.
The next session was led by Shelly Baer, Robert Hernandez, and Kevin Purcell (founder of Arthritis Introspective) on self-esteem and body image – “I’m sexy and YOU know it!” It, like many of the other YA sessions, was really a forum to bring up issues we had. It was interesting sitting in there and really realizing how far I have come in the last two years on self love and self care. I had multiple things I liked about myself and others were struggling to find just one.
It both made me proud of myself and show compassion towards others. It’s so hard to live with this disease as a young person, dealing with societal ideals of beauty when we can’t meet them.
That night the young adults hung out by the pool and took some selfies!
It’s been a while.
The next morning started off with an awards session, followed by a conversation on the new partnership between the AF and CARRA (the childhood arthritis and rheumatology research alliance).
I was starting to feel a little beat so I had to take up a lot of room.
The cool thing about CARRA is that it started out as a group of pediatric rheumatologists and researchers coming together to see what they could do to help these sick kiddos. We have all these great drugs, but more are coming down the pipeline. The registry that CARRA has developed can help to track information better and utilize patient information, deidentified of course, to bring more change for the better.
It’s an amazing way to promote patient engagement in research, which is something we all should be interested in.
The most moving part of the morning opener was when Vincent Del Gaizo got up to speak about his involvement with CARRA as a parent of a SJIA patient. He discussed his son’s difficult case and the changes in how well he’s doing now.
The next awesome presentation was about relationships. We heard from Dr. P (from the opening YA panel), Jeremy and Renee Forsyth, and George and Joy Ross. We heard about their stories and then it, again, turned into a very open panel. We discussed topics like disclosure, where I brought up telling T on my first date and how he’s always seen it as a part of me, communication, and recommitting to each other daily.
During our lunch break, I stopped by the Novartis table to ask about Ilaris and the different patient assistance programs available. Apparently they will even help you fight to get the drug put on your insurance company’s formulary! How cool is that?
T and I enjoyed some food truck goodies and I headed off to the next session on transition.
I was a little disappointed in that I heard there were supposed to be several people on this panel, but at the end we only had two – Catherine Miney and Janet Hess, PhD, MPHS, CHES. Janet helped to standardize the transition to adulthood across the state of Florida, which I’m sure wasn’t easy to do!
It was a very open discussion, and I wound up contributing to a lot of the answers with new ideas on how to handle what some of these amazing people were dealing with.
After sharing information on some of the apps I enjoy like Arthritis Power, I headed up to my room. There was another session to go but I was just wiped out and I needed to rest. Theron and I took a short nap and then went out for some late night barbecue before working on packing up.
In the morning we stopped by the walk & jungle bell run expo, where we ran into some of my favorite people like Tory who runs Mariah’s Movers. Then I ran into AF CEO Ann Palmer…
I bugged her for a minute to thank her for the change she’s brought to the organization because, honestly, this was a lot better than I thought it would be. Apparently she’s heard of me? Yikes!
We headed over to the hope tree next where we saw some of the cutest hopes, and I put up my own that no one else would have to lose a loved one to JA.
And then we heard from Joy Ross at the general closing.
They announced my friend Colleen Ryan as the next conference host and that we’d have TWO to look forward to!
The conference itself was so amazing. There were so many different sessions to chose from. The hotel was perfect, though sometimes the signage could’ve been better. The food was great and gluten free friendly. The people I met were amazing and the changes on the way will make the AF into what I’ve felt I wanted it to be, at least for the young adults – a way to shape us into advocacy leaders, a way to get us more involved, and a way to shine despite our illnesses.
My time in Florida was already amazing, from meeting my friend Emily to finally going to Harry Potter world to enjoyed feeding giraffes at Busch Gardens to sitting on the beach and relaxing. I didn’t have time to hit up Disney, but that just means I’ll be back Florida. You better be ready for me!
Wanna see me live-tweet at a conference? You can! Join me on my MedX journey Sept 24-27! I’ll be live tweeting the whole time so hit me up@kirstie_schultz, catch the live streams at the Medicine X website, and join in the conversations using the tag #MedX.