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I saw the list of topics and speakers and this looks so amazing! Or maybe its nothing new to those of you who have attended such conferences already. For me, I’m fairly new to learning’s of the ED-dysautonomia connection so I’d be a late registrant. I have yet to be diagnosed with EDS so perhaps attending is a bit premature, not to mention costly at this late date.
Apparently notes of the presentations will be available to the attendants but not sure if that will ever disseminate down to us who aren’t able to make the conference. Does anyone know how often information obtained from significant conferences gets passed on?
Is anybody attending the conference?
CharlieHi Charlie1, I attended the EDNF conference many years ago as soon as I diagnosed myself! Then I spoke at the next one, two years later. I loved speaking, and meeting everyone! Sadly, the next year I was slated to speak, but pointed out that on the front page of their website they have an article (“So you think you may have EDS?”) that instructs patients not to see optometrists! What?! I chatted with them about it, and tried to explain my thoughts about the important role that optometrists and/or therapeutic optometrists played for all patients with connective tissue disorders. So although I was a volunteer and primary author for their “Ophthalmology MRG” for EDS patients and was scheduled to speak, they did not want to remove that statement. That just seemed kind of nuts to me… I’m not sure why anyone would throw an entire profession under the bus! (ouch) We sort of mutually agreed that I would not speak at the next convention, and it has been a rough relationship since then. One reason I started this forum was because EDNF’s “Inspire” forum immediately removed a thread that someone began asking if I could be invited to speak at EDNF because of my current research. I remember the posts quickly grew over 60, then Inspire erased the thread. Shortly thereafter, they removed all of my other posts. I’ve never spoken publicly about this before, but frankly, it still hurts, and I still don’t understand it. I had always thought we were all in this together to help each other… Sadly, I no longer believe this is true, and I just can’t get excited about the EDNF conference. 🙁 Please let us know how it goes if you make it, and please say ‘hello’ to the patients for me, if you can! I’ll continue working full speed ahead! Hugs… Diana
Hi Dr. Diana. That is totally nuts! You were scheduled to speak yet they tell patients not to see optometrists? Huh?? Am I missing something?
Various organizations having the same goal with respect to educating those in need. That’s what we all assume is happening but never think much of what might be going on behind the scenes. I can understand why you would still be hurt.
We will not be going to the annual conference. I am too nervous that my health will nose dive after the flight and I’d be stuck in the hotel instead of learning more about EDS and the possibility of me having it. I’ll continue to educated myself through terrific sites such as yours! Thanks for all you do.Hi Dr. Diana. That is totally nuts! You were scheduled to speak yet they tell patients not to see optometrists? Huh?? Am I missing something?
Various organizations having the same goal with respect to educating those in need. That’s what we all assume is happening but never think much of what might be going on behind the scenes. I can understand why you would still be hurt.
We will not be going to the annual conference. I am too nervous that my health will nose dive after the flight and I’d be stuck in the hotel instead of learning more about EDS and the possibility of me having it. I’ll continue to educated myself through terrific sites such as yours! Thanks for all you do.Thanks for understand, Charlie1. I hate to expose patients to the behind the scenes stuff (we are already under so much stress!), but I also don’t want folks to think I’m being a snot. ha. I’ve seen more “politics” in medicine than I ever though possible. Crazy, huh? Oh, I understand what you mean about not knowing what will happen if you fly. Once I flew to see a specialist, and not only could I not get out of bed to get to the doctor, I couldn’t even get up to answer the phone! GEE-OSH. Flying is a roll of the dice, sometimes! 😉
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