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I am sure that the REF has made great strides in patient / Doctor / disease awareness. I think with all of our help we will cut that “2 decades behind”, down to “presently”. I like to think that all of us in #rheum and other chats, forums, websites etc. Will bring the ivory towers down to size & help “real” people with real needs. Thanks once again Kelly for you insights and being our voice at meetings such as this.
good words Russell
Excellent article as always Kelly. Looking foreward to the day we catch up to diabetes, lol. Glad they are starting to focus on the heart and lungs, this might help us live longer and get less of the confusion with grandma’s arthritis.
zactly right
One hand, one foot, slowly…one day at a time. We will get there. Looking forward to hearing more news. Thanks for putting yourself in that akward position for us Kelly. It’s draining work isn’t it? Get some much needed rest.
nice that u got it chelsea 🙂
Thank you for being our voice out there! Know that even though we may not be with you physically in that room..you have thousands standing right beside you. Please don’t EVER forget that. Your hard work will bear fruit. The seed has been planting, the watering just begun! Thank you for all you do!!
this is a good article Kelly. I hope that you remember the ivory tower is made by our pain and disability; it is up to us to make it a more realistic level – on the ground where the real people live. Thank you for a good blog (maybe Dragon Dictation (medical version) would help you with your typing?)
This is encouraging information Kelly. Thanks for traveling to this meeting in spite of severe pain to be our voice! I often wonder, what it will be like in 20 years for RA’ers. This I know is NOT the best time to have RA, but it could be worse like it was 20 years ago.
I kept thinking you should have held up a little sign at the meeting saying:
“GOOD Doctor needed, must have the guts to take on a high profile E-patient with severe unrelenting RA” 😉
Ask and you just may receive!
So far, I’ve kept any notion I had of e-patient to myself. Maybe that would work. I felt like an intruder when I raised my hand, so it’s hard to tell. I did talk to a couple of people who I know really want to help patients so that does give hope to hold onto.
Very nicely put about the best time – until there is a cure, there is not a best time. 20 years ago, patients had asprin (NSAIDs) and steroids. Unfortunately, I know too many patients who rely on these still to try to get relief.
I hear ya, and lets hold on to that hope you found.