"Suffering the Slings and Arrows of Outrageous Fortune"

So, Dr. Diana Driscoll has published the long-awaited part 2 of her theory. I know she has been working like a crazy woman on it, even through some serious health issues. I have such an appreciation for her and her dedication to piecing together the puzzle that is EDS.

The document is in the form of an e-book and is designed for the Kindle – although you can download it on your PC. Dr. D has a video on her website that details the steps to take to download it to your computer, if you do not have a Kindle. It does take a few steps but it is worth the effort and is pretty easy. And if I, who is technologically challenged, can figure it out – so can you! In a few days, it will cost 99 cents to download it but for now it is free. I think I am going to wait a few days and pay to download it on my daughter’s Kindle (if I can persuade her to let me), in addition to having it on my PC. It is the least I can do to help support Dr. D’s research.

I have only given it a brief read-through this afternoon, but I think the information about mast cells, CCSVI and vasal nerve compression are quite fascinating. And, as usual with Dr. D’s work, is right on target with what EDS patients are living with day to day. I am eagerly awaiting the day when this information is widely accepted by the majority of doctors who treat EDS patients – heck, I would be happy if  just a minority of doctors accepted it!

Dr. D – thank you for all you do and for every moment you pour into teasing apart the mysteries of EDS! Bless you!

 

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Comments on: "The Driscoll Theory: Part 2" (7)

  1. Wow! Thank you so much for your kind words, my friend. I hope Part 2 of The Driscoll Theory is of tremendous help for you and soooo many others.
    We are getting answers, study results are rolling in and telling us the story.
    Please stay close to http://www.Prettyill.com because I will be announcing a registry soon where we can all have the same blood test performed. This should be AMAZING, and science is just now getting to the point where we can have tests to show just how sick we are! (I get an odd sort of comfort from that.). The best news, is that we can then start the proper treatments. Let’s put a rush on that, shall we?
    🙂 Big hug, Diana

    • Dr. D,
      It is no exaggeration to say that your work is groundbreaking and is changing lives. Thank you again for all the work you are doing. BTW, I hope you are taking care of yourself in the midst of all of this – no more kidney stones, etc, I hope!

      The registry sounds awesome!I definitely will keep an eye on the web site and will be happy to talk about it here. I will always point people to your work because I know personally how life changing it can be!

      Thanks again and big hugs right back at you!

      Beth

  2. […] The Driscoll Theory: Part 2 « Our Life with Ehlers Danlos Syndrome. […]

  3. M'sMommy said:

    Beth, I originally found your post with the title “What I Wish I Knew Then”. It’s like you were describing MY daughter. I showed my husband and we were both amazed to read your description. My daughter can’t walk across a parking lot without asking us to pick her up because her legs hurt. She always wants to ride in the cart. (She’s 6.) We always know that if she even attempts to run or play, she will be in agony with painful legs that evening. She is so “clumsy” and floppy and constantly hurting herself, yet she is so flexible and “gifted” in gymnastics (though her coach did tell us we need to work on strengthening her floppy muscles.) Her pain in her joints became apparent to us by the time she was 2, and we knew that her gait was off and floppy. Her doctor diagnosed her with hypotonia and growing pains. Everything changed about 3 weeks ago, when my niece and sister were diagnosed with HEDS, which I hadn’t heard of. Coincidentally, I was going through life altering “heart racing” and blood pressure issues that began with with tons of pressure in my ear, that actually leaked… light sensitive migraines, dizziness, vision blurring, (what I was scared was seizures) when my sister called me to tell me that we need to see her geneticist. At that time, I thought sure, we need to get in to get my daughter diagnosed and protect her joints so she won’t end up with the excruciating knees and ribs that I have… but my “heart issues” seemed more urgent than my joint issues for me personally. I clicked a link on your blog, to the Driscoll Theory. Wow. I have been in information overload ever since. I fired my cardiologist who had no knowledge of POTS. Yesterday, I traveled to a new “POTS knowledgable” cardiologist hours away. He immediately knew I had POTS and was open to the Driscoll Theory and trying Diamox. I had a printed copy of the Driscoll Theory Part 1 that I left with him. I go back on Monday and hope to start Diamox then. My daughter and I will see the geneticist in a couple of weeks (my daughter is 9/9 and I am 8/9 Beighton scale, though we have way more “tricks” than the Beighton scale). Unfortunately, the head circumference study also appears to be describing my daughter. Thank you for blogging. And thank you for linking me to the Driscoll Theory, where I am hoping to find more answers for my daughter and myself.

    P.S. I downloaded both part 1 and part 2, but can’t find a way to print up part 2. I was able to print part 1 because there is a PDF link on Prettyill.com, but can’t seem to get the part 2 printed to give to my new doctor. I’ll have to post a question on the forum there and see if anyone knows.

    • Hi!
      I hate that your story is so similar to ours – but I also know how affirming it is to realize all those weird things can be explained by EDS. When I first started on my journey, I was so blessed by various blogs I found and I am so glad you were able to find some help here! I found the Driscoll Theory by total accident and once I knew it explained nearly all of my daughter’s symptoms, I knew I had to share it with as many people as possible. I cannot say how happy I am that I might have helped to point you in the right direction!

      I am so absolutely overjoyed that you found a cardiologist who is open to the treatment options in the Driscoll Theory. I think that is pretty rare but I hope it helps you like it helped my daughter.

      Right now, I think part 2 is not available to be printed. Dr. D has said that the other researchers were concerned about having the paper broken up and so the compromise was to make it available on the Kindle. I think she has also said, you can ‘gift’ Part 2 to your doctor – it would take a little effort on their part to download it but at least it is available in that way!

      Anyway, good luck next week with the Cardiologist and in general to you and your daughter. Please, let me know how it goes! It does us all good to occasionally hear a ‘happy ending’.

      Beth

    • Hi M’sMommy,

      Wow, I am so happy to hear that The Driscoll Theory hit home with you, too! I hope that it starts you and your daughter down the right track to recovery.
      My work continues as I research ways to help with our vagus nerve compression and CCSVI. I hope to have some studies and options for us soon!
      For Part 2, some of the doctors and researchers I will be working with wanted to be sure the theory stayed together, so this was our compromise (Part 1 ended up on sites in pieces — very confusing!). I will have the paper copy ready soon (so sorry — I was in the hospital!), but until then you can “gift” your doctor a copy, just for 99 cents! You’ll see that option right on the check out page. I hope that helps!
      Big hug,
      Diana

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