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Wow is all I can say. This blog has really renewed my hope for the future. (and made me green with envy I couldn’t be there lol) Love you Kelly and Thank you
Mostly all I can say it it was very hard but still very “worth it” over & over. Oh, and I can’t wait to do it again. :rotfl:
Interesting view as always Kelly..
My old Mum used to say there were more ways to skin a cat and as a patient advocates we all know that more than others!
I’m looking forward to reading some of the interesting articles coming out of the ACR.
I think we all tend to forget how many are trying to fight on our behalf. Yes drug companies do take their pound of flesh when they discover a drug that helps, but let’s face it we don’t see the years of work that have gone into the development, testing and finally marketing of that drug.
I think we are living in exciting times as new things seem to be coming up into the pipeline all the time.
If we are all lucky we may find a cure that will allow us to be ‘normal’ again, but till the time arrives we must make the most of what there is.
Thank you again for all your hard work on our behalf.
Xx
Jakki, your optimism means so much to our community. I thought of you when I realized that EULAR is in London next year. I know it’s a long shot at this point, but wouldn’t it we awesome to have tea?
Awesome article Kelly – really can’t wait to see more! I think I’m going to check out the ACR site and see if I’d be able to attend as a health care professional…(who would incidentally wear her “I am an RA Warrior” T shirt the whole time there LOL!)
Marie, let me know if you do that! I’ll want to link arms! ♥
So exciting the things you learned, saw and heard at ACR Kelly!We are looking forward to all you have to share….I am sure you are bubbling over with info but please pace yourself 😀 Its exciting and reassuring to hear about the folks out there fighting for us and working hard to find a cause and a cure…..thanks for going on our behalf! And do rest up and take care! xoxo
Thank you Nancy. I will try hard to take care of myself better. I was working from bed all day yesterday. Will do school w/ my boys today from the sofa! Just wish every joint didn’t hurt – starting to get impatient about wanting relief since it gets in the way of everything. :-/
This is a really fascinating insight. I live in Dubai, UAE and was fortunate enough to attend the patient’s evening at the recent rheumatology conference over here. I agree that listening to doctors present their perspective and findings is fascinating. My rheumatologist who is also in Dubai attended the ACR conference so I look forward to hearing her thoughts too. Great blog Kelly. Did you know it had spread all over the world?
Hi Sarah! yes, I have gotten many emails from India, Phillapines, Europe, Australia… all over. ACR 2010 was an international event. Americans were a minority. I loved watching presenters from other countries especially the many young ones!
It is so wonderful to hear from you! Thank God for the internet!
Thank you again, Kelly. I, too, can’t wait to hear more about this conference. Too bad the ACR meeting syllabus is not available online to non-members. You have always provided good references to us, so I’m looking forward to references from this meeting too.
I am struggling to hang onto my methotrexate because it has been so effective, but liver enzymes are up. Splitting the dose between 2 days makes perfect sense. I think my rheumy will consider it if I can provide a reference. Hope, hope. Thanks for providing that particular example of disease complexities.
I’ll try to find that soon – it is a huge haystack & I’m going to plow through it! I just went to a portion of the RA sessions since they go on concurrently all day! Incredible.
Hi Kelly,
Great post this morning. If you need any help deciphering some of what you’ve seen or how it fits into the whole process of drug discovery and development, let me know. I’m free to speak in generalities.
I’m also glad to read your comments of appreciation for the researchers. For all those diagrams you mentioned, know that to create those that years and years of basic science and research went in to figuring those pathways and linkages out. All this work is critical to finding new treatments and possibly a cure. If you can define the problem then we can come up with a plan of attack. We’ll beat this monster someday.
Awesome thoughts!
I’m very happy to see that Pharma, in this case Roche/Genentech, is finally going about things in the right way and contributing to healthcare in the proper way (i.e. via e-Patient and “Patient Advocate” @rawarrior).
Kelly, It seems to be an exciting time in RA research and that gives us all hope. I remember, as do so many others, when it was basically aspirin, NSAIDs, and prednisone as the mainstay of treatment, which did nothing to affect the actual cause of the illness. The complexities of RA you saw presented , must have made your head spin and I so agree with you that the juice cure cannot possibly do anything against those complex factors. Thank you for attending the conference and now for writing about all of it . A special hug for daughter Katie Beth for helping her mom. 🙂
Kelly, you are exactly correct in the statement you made that RA is more difficult to cure than cancer. The simple reality is that we CAN cure RA by radiating the body and killing our immune system. No more immune system, no more attacking our own cells and joints. Unfortunately, eliminating our immune system would kill us within a few days. That’s because we must have a FUNCTIONING immune system and ours as RA patients does not functioning correctly. When they are trying to cure cancer, they can work to eliminate it from the body. That’s not an option for us (though it may be that we can discover a way to eliminate a part of the immune system IF AND ONLY IF that part can be replenished and function correctly when it is restored).
As a medical professional and someone who routinely attends science conferences, I never thought of how our conferences would look to someone not involved in the science side. I can’t imagine how fast paced and complicated it must have felt to you (and sometimes feels to us who do research!) so a big “Kudos to Kelly” for even having the drive and courage to go. I’m so glad you were able to gleen some applicable information for us all.
And don’t worry about getting through all your notes and papers quickly. Most of us take several months to find and digest everything that we picked up at these conferences. For me, when I go to these conferences, I try to rest and save myself for the sessions I really, really want to see. The rest are usually avaialble online or via CD after the conference. Take your time, rest, and we’ll be listening when you’re ready to share something more with us. 🙂
Mary Taylor, PT, DPT
Golden, CO
Yes, that’s right Mary. I’ll be watching some videos since my fingers couldn’t take notes fast enough anyway and I just wanted to absorb while I was there.
Marie, the ACR has a companion organization called the Association of Rheumatology Health Professionals, and you can attend the conference under their auspices as a non-MD. Many nurses and PAs both attend and present at the ACR (though their presentaitons tend to be more focused on patient education, insurance issues, and palliative care). In fact, it is a bit cheaper (though still steep, ~$700) to attend the conference under the AHRP, as MDs pay a higher fee to cover their Continuing Medical Education Credits.
Sarah, there is also a Pan Arab Rheumatology Congress. The 9th one was held in April 2010 near Amman, Jordan. They are a bit disorganized compared to the ACR, EULAR, PANLAR (Latin American ACR) and APLAR (Asian ACR), and I have not heard where, when or if the 10th Congress will be held in 2011.
Kelly, Thank you, thank you, thank you. I am excited about all we are going to learn but you have already helped me immensely. I have been having an awful Monday in many ways and as always your website is the bright spot. I found encouragement and hope. I can’t believe your example was the one about splitting doses of MTX. I have been so concerned because my ALT keeps sneaking up in every lab result. My rheumatologist had already said that I could split doses because of side effects but I never dreamed it might help the liver situation. You have given me something practical that I can try and a big dose of hope when I really needed it. You are an answer to prayer today and many other times. God bless you.
Kay,
I really hope that helps you – I can see you are dedicated to trying. Sometimes they back the dose down & raise it again later if possible. Good luck!
I can’t imagine how exciting, but overwhelming attending the conference must have been. You are awesome to have braved something new while not feeling good and knowing how much you would hurt afterwards! You are my hero! I’m looking forward to reading all of your thoughts on what you learned! But PLEASE take care of yourself! You are way too valuable to all of us!
You are right, Dee. Sometimes I wanted to stand up & applaud & other times I wanted to cry. I am trying to take it easy now – feel very lazy. I’m really tired of being sick, you know?
Wow. I downloaded the supplement volume of the abstracts. It’s 1038 pages long! I had no idea the meeting was that huge. I can hunt for that particular session on my own. You just take it easy! I can see that it must have been very difficult to decide which sessions to attend.
Marge! yes, it was that big, but NO I didn’t do what you did! Have fun with that! 😉 Yes, it was hard to know just where to go. I was glad I had some help choosing & then I’ll watch more on video from here.
I’m so glad that you were able to attend and there was an actual patients voice to represent all of us. Thank You! I can’t wait to hear more and follow up on what you learned. Thanks for sharing!
Thanks Kelli. 🙂
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