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:
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: