- This topic has 8 replies, 4 voices, and was last updated 8 years, 9 months ago by
.
-
Posts
-
Hello, my friends, Someone sent this article over to us, hoping we’d send in a few comments. It’s true — they paint the more traditional view of “exercise a bit and it’s no big deal”. Yikes. http://thechart.blogs.cnn.com/2012/05/28/what-is-elhers-danlos-syndrome/?hpt=he_c1
Dr. Diana, a woman left a comment to that article with a link to her life’s work finding a gene responsible for her family’s HEDS. If you haven’t seen this material already, might be an interest to you and your own research.
http://www.mthfeds.com/http://www.turnto23.com/health/31122357/detail.html . Here is another ‘spin-off’ of the article to which you refer, Diana. No responses on this one. CNN really ‘gets around’. Ugh!
http://www.thedenverchannel.com/health/31122357/detail.html
Anyway, if you google CNN and Ehlers Danlos – you get pages and pages of the initial article that you posted, Diana. It appears that every newspaper (at least published online – I have no idea about the paper copies) in the country has ‘caught on to’ this article. It’s clearly been released by TONS & TONS of local newschannels throughout the US have picked up CNNs article and re-printed and circulated it throughout their local communities.
Good luck to those who are seeking much needed medical help for Ehlers Danlos. Ugh! Go buy some acetaminophin and hope it doesn’t rip up the GI tract, I guess – at least according to the doctor they interviewed. I’m sure we all know how much good this doctor’s advice is.
There should be legal accountability (in my opinion) since many of the statements were blatant falsehoods. There should be a retraction, no question (imo).
Dr. Diana, a woman left a comment to that article…
Thanks, Yes, I’ve seen this. I had to be sure our family didn’t have any of these funky genes, as a “snake-oil” salesman we saw for a while was treating us with expensive supplements that on the surface sounded good, but when I learned there was a genetic test for it, and we turned up negative, I realized we had been “taken”. Ugh.
We are all unique in some ways, but my research is trying to hit the majority of us. There are sooooo many genes, conditions and circumstances that can come together to cause the fallout from connective tissue diseases. If we’re smart, we won’t forget our brethren — Loeys-Dietz, Sticklers, Marfans, cutis laxa, etc. As time and research continues, we will learn of many more slightly unique syndromes, I have no doubt.
Thanks, Ht888! (kind of a catchy name, there! ha.)Thank you Dr. Diana :)) It actually has a meaning: “H” stands for “healthy” or “happy” depending on what I need at the moment :)), “t” for my name, and 888 is a powerful code from Egyptian numerology. It represents victory, power and eternity (8 turned sideways = eternity). Before this whole EDS/POTS/Chiari fallout happend to me 8 months ago, in my spare time I had studied Egyption Code of Destany and how our name and birthday can tell about our soul purpose and lessons in this lifetime, all mystical stuff. Good, old days… Now I spend all of my time reading everything I can get my hands on about EDS. Today got a paperback of the Driscoll theory in the mail, was so excited to read until I got to page # 16 where it says that “surgery may be inevitable if you have retroflexed odontoid”. This is what I “think” I have; sent my paperwork to TCI and waiting for thier reply. Will see where it takes me… This is the only time when I wish I was wrong!!!
Thank you in advance for your feedback.Thank you Dr. Diana :)) It actually has a meaning: “H” stands for “healthy” or “happy” depending on what I need at the moment :)), “t” for my name, and 888 is a powerful code from Egyptian numerology. It represents victory, power and eternity (8 turned sideways = eternity). Before this whole EDS/POTS/Chiari fallout happend to me 8 months ago, in my spare time I had studied Egyption Code of Destany and how our name and birthday can tell about our soul purpose and lessons in this lifetime, all mystical stuff. Good, old days… Now I spend all of my time reading everything I can get my hands on about EDS. Today got a paperback of the Driscoll theory in the mail, was so excited to read until I got to page # 16 where it says that “surgery may be inevitable if you have retroflexed odontoid”. This is what I “think” I have; sent my paperwork to TCI and waiting for thier reply. Will see where it takes me… This is the only time when I wish I was wrong!!!
hank you in advance for your feedback.This is tough, Hon, I don’t have any advice for you about the genetic screening, especially not knowing anything about your case… I usually am a “knowledge is power sort of person, though.” Now, on surgery, TWO neurosurgeons recommended LP’s, neck fusions, Chiari surgery (“Chiari Zero”) and even wanted to consider the zipperhead surgery for both my son and I. I could see the evidence of cervical instability on the MRI and the pannus. But I really felt like something was getting missed because my son and I were both virally induced. I believed it couldn’t be totally anatomical… Understand, though, I had gotten to the point where I couldn’t turn my head without feeling like I was passing out — I had ALL of the symptoms of a retoflexed odontoid and Chiari. Worse, I was ready to have my head decapitated — I just couldn’t hold it up any more. Cervical collars were the norm, but not a panacea. The morning after I lowered my pressure with Diamox? SYMPTOMS GONE. Thank Heavens, my son had the same response. External communicating hydrocephalus is almost never properly diagnosed, but especially with our laxity, it can exacerbate all of the signs and symptoms of Chiari and retroflexed odontoid. Once my brain floated again, that loose odontoid became asymptomatic. So, caution is the word of the day. For those folks whose odontoids are giving them a “brain kabob” even when their brains are floating nicely, and they have Diamox working well, THEN options are more limited. But PLEASE exhaust all of your options first, OK? 🙂 Diana
Thank you Dr. Diana, will do. Just finished reading your book, have lots of hope! Will be discussing with my doctor. Thank you for publishing your research and findings.
Thank you Dr. Diana, will do. Just finished reading your book, have lots of hope! Will be discussing with my doctor. Thank you for publishing your research and findings.
That is great on all counts! And you’re welcome! I can hardly wait for the “real” peer-reviewed journal publications. I’ll keep you posted! 🙂 Diana
- You must be logged in to reply to this topic.