I know that I touched on this a bit in my last post, but I wasn't able to give it the love that I wanted to. I'd like to start by thanking the Arthritis Foundation. I cannot express to you how much they have changed our lives. We would not have been able to attend this year if it wasn't for them. They have done so much for us! We try to give back as much as we can, but I will forever feel in their debt.
The JA Conference this year was near Washington D.C., in a Marriott in Crystal City, VA. The hotel and its view were both beautiful! The conference started on Thursday. We didn't arrive in D.C. until after the first evening's festivities were mostly wrapped up. We did have the opportunity to attend the first networking sessions. Those are very important. They broke the parents into mom & dad groups, and the kids were with their own ages. It's so cool to get together in a large room filled with other people that are going through exactly the same things as you. This years added appeal for me? My Facebook groups! I am so blessed to have found these wonderful ladies (& a few gentlemen) on Facebook. Each and every single one of them is amazing in their own way. Many have raised a staggeringly high amount of money for the AF. Most are trying to raise awareness, some are trying to start non-profits, some are donating to their hospital's children's rooms. Some are dealing with extremely sick children; others are just trying to get by as single parents with chronically ill children. Each one is amazing in their own way. This year as our group is nearing the one year "together" mark, many of us were able to meet in person! It was truly a huge blessing meeting these people. (Have I stressed that enough? You just couldn't know unless you went!) I truly felt at home, excited, energized, and with my family. It was a beautiful weekend! Not nearly long enough. I soooo wanted more time with the Amy's & children :) I need to get out more. I don't get out enough, so when I do I am completely overwhelmed. I don't know where the time went! I don't think there could possibly have been enough time to chat with all of these people the way I wanted to. Love you all!
Friday- The speakers during the opening session talked about some of the CARRA group's research and clinical studies. One of the speakers was Norman T. Ilowite, MD, the principal investigator of the RAPPORT study. This study is extremely important to the parents and children affected by Still's Disease, a systemic form of Juvenile Autoimmune Arthritis, or SJIA. This session also addressed the importance of participating in and supporting clinical trials.
We had our choice of where to go for the next round. We chose "Other Pediatric Rheumatic Diseases", hosted by Dr. Natasha Ruth. This session addressed different forms of vasculitis, Lupus, MCTD, Dermatomyositis, and Kawasaki's Disease. We learned a lot in this session, including what some of the bumps on Emily's hands may be from, that you can have a +ANA and not have an autoimmune disease; we learned about central nervous system disorders, and we learned the Emily should have an Echocardiogram yearly. I also asked a question that has been bugging me for a while during this session. To me, through all of my research I believed that, while many people with Mixed Connective Tissue Disease may have myositis symptoms, from her initial onset I truly believed that Emily had developed the DM as a separate disease. I also believe that she did at some points have myositis features, before she developed the full-blown disease. I asked this doctor if that was, indeed, possible. She agreed that it sounded likely in our case. This means that, while having no confirmed systemic features right now, Emily has 2 systemic disease. (I later confirmed with Dr. Rider, also.)
The next class that I went to was "JA Perspectives Panel". There were several speakers here, all of which either had JA as children or have been parenting children with JA for a significant amount of time. This is a great time to ask questions about what the future may potentially hold, or how to handle certain situations.
The next class that we went to was "Medications Used Commonly in Children with Rheumatologic Diseases", presented by Dr. Sandra Hong. OMGosh!!! If I was ever able to just move to follow a doctor, I would follow her. I love our rheumy's, I trust them, I know they have our child's best interest at heart. However, this little lady is a huge ball of energy! She looks about 25 (gotta love Asians!), and she spoke like a teenager. This would create obvious appeal to the kids. She was so cool & down to Earth! Kevin & I totally loved her. He didn't go to this class with me, but we had a pow-wow in the hallway the next day with her. She wanted to make sure that we didn't have any questions, that she discussed what we needed to know about, etc. She gave us some really great advice on meds and tests to keep in mind. She was seriously awesome.
Saturday brought an opening session on advocacy, as well as an awards presentation. We had somewhat of an inside view into the health care plan, how to make friends with your representatives, how to gain approval for your cause, etc. This was very important information since we really don't have enough people meeting our politicians advocating for our kids. This was hosted by Kevin Brennan & Calaneet Balas.
We chose to go to "To Rest is to Rust" next, hosted by Jennifer Horonjeff, MS. We missed half of this session as we ran into Dr. Lisa Rider, co- author of "Myositis and You: A Guide to Juvenile Dermatomyositis for Patients, Families, and Healthcare Providers". I was sooooooo excited to meet her!!! I discussed another CARRA group research study with her, "Rituximab in Refractory Adult and Juvenile Myositis (RIM) Study". This was huge to me because our rheumy had asked us Wednesday to consider trying this. I was able to speak with several people that have tried this, parents of children that are on it, and Dr's Hong & Rider. This conversation with Dr. Rider helped me to make up my mind for sure to try this approach. She was so cool, so brilliant and so sweet! She told me that I could always call her office with questions and she would be more than happy to help. How many doctors would make an offer like that? I really appreciated this time with her.
When we finally got into the session we were headed to, it was mostly over. However, we caught enough to figure out that we don't really fit into a category at the moment. There are a lot of things that Emily can't do because Prednisone can cause ostopenia (brittle bones). The speaker was sooooo cool! She was another twenty-something that I really hope also spoke to the teens. She was pretty awesome. She was very funny & animated and used visual aids to help make her audience understand.
After lunch we chose to head to "JIA & Jaw Issues" with Dr. Randy Cron.This brought up some scary points, like most children have jaw involvement and don't even know it! Up to 81% of JA kids have jaw issues. This can cause the jaw to not grow properly, causing deformity with a "short" jaw. Most docs don't think to order an MRI, and if they do, most radiologists don't know how to read them for children. How astonishing is that??? We missed a good chunk of this class speaking to Dr. Hong, but what we caught was rather unsettling in content but very informative! Excellent speaker and session.
Our last session of that day was on "Community & Financial Resources from A-Z". Honestly, I knew a lot of this already. There were a few good links that I wrote down, but I had already researched this area a lot. I thought maybe I had overlooked something, but I guess not. For a parent new to having a sick child, this would have been a huge help.
Overall, we learned so much! It was so good to be able to keep Emily & her brother together. They were in the same room as some other Florida children so Emily felt a bit more comfortable than last year. (It was a mistake bringing her to Philly without her brother.) Also, we didn't know that she was more sick at the time. It was a few months later that the puzzle pieces came together. It was good for my son to be with other JA kids. They had a session with Mr. Byron Janis, pianist, songwriter & Psoriatic Arthritis patient. I was really excited about this since my son has psoriasis with no arthritis. We don't know anyone else with psoriasis that is his age, or even with psoriasis as visible as his.
This was also a fantastic time for my oldest. At 16, I thought that she may be bored. Apparently, she did, too. Not so much :) She asked if she can come back next year. I don't think that she has really understood all that her sister goes through, either. I believe this experience helped her to "get it" more. I'm so glad that we were able to go as a family. Everyone really needed this.
One more note on the AF- recently a good friend was laid off. We all know the economy is horrid. Arthritis is so misunderstood and under-appreciated, & while the AF has very few paid employees, it's hard to keep all of them right now. While we are sure that he will do very well in future endeavors, we know how much this person did for our children. It was his heart that helped many of us in Florida come together. Between Facebook and planning days for us to meet, he got us together. He started the "Mom Squad". This was hugely important for me. This made me feel I could be more proactive than reactive, & I was making a difference. I'm hopeful that this program will continue to grow, but I'm sure it won't be with as much love and nourishment as he provided. And he waited until after the conference to tell us all so we wouldn't be sad there! How sweet is that??? We are very grateful to have had such a kind, loving heart working so diligently for our children. I won't name names, but he knows who he is ;) I know he will remain a friend on FB and we'll probably meet up again, but I will continue to mourn the loss of his presence with the AF. I will continue to do all I can, maybe even more now. Thank you for all of your hard work for us. Luv ya!
*My 13 yr old is an old lady that turns purple* My 13 yr old daughter has Mixed Connective Tissue Disease, (Lupus) which means multiple overlapping autoimmune diseases. She has Dermatomyositis, & Juvenile Arthritis. Yup, arthritis. She turns purple when her hands and feet get cold, which can happen from A/C. She was first diagnosed at age 6. My 11 yr old son has Psoriatic Arthritis. All of these are Autoimmune Arthritis. We share so you can learn!
Friday, July 22, 2011
The JA Conference! (Long)
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Wow, sounds like a great weekend! One day I hope to be able to afford to come down to one of the Cure JM Conferences and meet all the wonderful people :)ReplyDelete
I am so glad that you all got to enjoy this weekend and meet so many families and doctors.
Conference sounds like it was amazing! We hope to go next year. I am a little jealous that you got to meet so many of the families that we interact with on FB!! All my love to you and the family, I miss you guys!ReplyDelete