"Suffering the Slings and Arrows of Outrageous Fortune"

Alrighty, folks…Here is a post I have been needing to get up and one that was certainly not put off for lack of interest. Suffice it to say, I am intensely interested in this development and I am sure many of you are as well.

Dr. Diana Driscoll, EDS patient, researcher, (and a very patient researcher, ha ha 🙂 ), and amazing author of the Driscoll Theory, which has been an incredible blessing for so many EDSers, will be releasing an updated and revised version of her theory soon. As usual, she is dealing with her own serious EDS health issues as she moves forward with her much needed research and her hopes to have this big project completed already were derailed by a hospital stay. But, in the midst of her recovery, she is hard at work getting the newest version of the Driscoll Theory ready for publication. The lady never stops!

Going off task for just a moment, I would like to ask for your prayers for Diana – for her health, for her family and for this much needed update of information that will make such an incredible difference for so many people. She doesn’t often say so, but the path she finds herself on is not an easy one: the path less traveled (especially in the medical world) is hard and lonely and draining, in every sense of the word – physically, emotionally, and financially. And that is on top of her own life as wife and mother and daughter and friend and seriously affected patient. Keep her in your prayers, if that is your way, and at least wish her the best, if it is not. 🙂

I know many of you share my deep gratitude for the work Dr. D is doing on behalf of the EDS community – my daughter has a real chance at life because of the Driscoll Theory and she is not the only one by far! Bless Dr. Diana and her amazing work on behalf of EDSers around the world.

Ok, back on task with a message straight from Diana herself:

 

Updated Driscoll Theory

By popular request, The Driscoll Theory (updated, with numerous experts)
coming soon! We’ll cover information about intracranial pressure, why we
need to move past mast cell activation, what’s up with our vascular
abnormalities, “Diamox Pearls”, inspiring patient stories and more.

Many of us are working hard to get this to you so we can answer
many questions at once. We’ll keep you posted! 😉

 

As you may know, initially, Dr. D generously shared her theory online, but eventually had to remove it thanks to some unsavory people misusing it for their own benefit and placing EDSers at risk. It was a sad situation that made it more difficult for affected EDSers to get their doctors to consider the theory. So, the updated version will be a welcome development!

It will be an enormous help to have additional information published about the life-altering treatments proposed in the initial version of the theory. It is incredibly frustrating to have these treatments, which could help so many, viewed with derision by the ignorant medical establishment and thus just out of reach for too many EDSers who desperately need them. The upcoming update will move the conversation along and hopefully give the naysayers something to think about.

So, hang in there until Dr. D is ready to run with this – it won’t be long. I can’t predict the timeline with much accuracy, but I think the goal is to have this ready in the next couple months. If you can, share this information so we get the word out. If you are on Facebook, here is a post from Dr. D that you can share:

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Comments on: "The Driscoll Theory Updated" (2)

  1. Betsy Dachos said:

    Thank you so very much for all you share. My daughter and I are so looking forward to the possibility that Dr. Diana’s theory will help. I had tried numerous ways to get the original but it was out and I couldn’t get it anywhere. There have actually been times I wanted to just pick her up and take her cross country to Texas to get some info. This work is greatly anticipated. I believe it will make a huge difference and can’t wait to get it. I hope to be able to get this one especially since I couldn’t get the other. I’ll appreciate knowing how to be one of the firsts so we don’t miss out again. We haven’t gotten all the help we need and especially have to get in for Mast cell symptoms as increasingly anaphylactic responses to many things. Couldn’t get much info online.. just know take a zyrtec and can try combo with zantac. Inhalers useless. So anxiously await Dr. D’s help. I don’t know what all the politics are but it’s a crime how they harm. We’ve had experiences with huge ignoramous egos, inept as they could be, criminal that they have any power. (at Children’s no less.) Stuck our necks out in search of support and help but found lousy politicizing, inaccurate judgement everywhere, so pulled back. Protective and cautious. I apologize for not reaching out to you more than my initial contact long ago when I first discovered your blog.. Felt connected as kindred spirits with amazing daughters. I probably should have been in touch long ago as I have appreciated your thoughts/updates about your family and Justina, looking at as much info as possible everywhere, I tried to support. Signed petitions too. And we prayed. Always will. The words don’t suffice – Thank you. You make a difference. My best thoughts and prayers for you, your family and Dr.D. An unknown friend, Bets

    • I know it is extremely frustrating to know -or at least strongly suspect- that this theory could help and then find it impossible to get anyone to listen. I know we lucked out and I have a bit of guilt over that. Maybe something like survivors guilt? I feel so bad for the people who cannot get a doctor to let them try Diamox. Of course, we had a long journey to get to someone who would let my daughter try it, but, still, my heart breaks for those who find themselves on that journey with no end in sight.

      I hear what you are saying about the politics. I have tried not to get into too much detail on my blog, simply because I essentially believe those EDS experts who have not jumped on board (which is all of them!) are well-meaning in their delay and I certainly didn’t want to burn bridges. However, as time has passed, I am not convinced it is all well-meaning… These folks are human and just as prone to stupidity as any of the rest of us. There is territorial crap going on, grappling for recognition, and a baffling tendency to push expensive surgery which benefits the doctors and harms the patient. It is hard to tell even just our personal story without alluding to the politics of this issue, so I have just tried to be both truthful and discreet at the same time. I still don’t want to bash anyone but it is just ridiculous and, when you consider the level of suffering going on, disgusting.

      Thank you so much for your kind words – and for reading and commenting. I started this blog simply wanting to have a place to vent during some of my darkest moments, hoping it would help someone, somehow. So, it is always good to hear that someone is benefiting from my ramblings. 🙂

      I will definitely keep posting about the re-release of the theory. Dr. D is keeping me appraised and I will make sure I share when I know more!

      The best to you and your daughter! Meeting others on the same journey is one of my favorite things! 🙂

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