281?1253674568
Ehlers-Danlos Syndrome User Group
Utube videos of EDS dr~~~
About This Group:

This group is for members with any form of Ehlers-Danlos Syndrome.We have this group to share info and support for each other. Ehlers-Danlos syndrome (EDS) is a heterogeneous group of heritable connective tissue disorders characterized by articular hypermobility, skin extensibility and tissue fragility. Individuals with EDS have a defect in their connective tissue. It is this tissue that provides support to many body parts such as the skin, muscles, ligaments and organs. The fragile skin and unstable joints found in EDS are due to faulty collagen. Collagen is a protein that acts like glue in the body adding strength and elasticity to connective tissue.

Founded by somemonkey on September 22, 2009
158 members
Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

Utube videos of EDS dr~~~<img src='/RoR/images/blank.png' class='icon_img_ww push_pin_icon'>

Hi all here is a link to several videos by a Dr that has EDS and shares info on this condition.

I hope these help answer some questions:

http://www.youtube.com/watch?NR=1&v=ZhpOZNVIdLs
Dr. Diana as Patient explains the various forms of Ehlers-Danlos Syndrome

http://www.youtube.com/watch?v=JMpvnG0J4R0&feature=related
Dr. Diana describes the Classic form of Ehlers-Danlos (EDS) and how to differentiate it from the Hypermobility type.

http://www.youtube.com/watch?v=k4ob-Lf8sTo&feature=related
Dr. Diana as Patient describes the Hypermobility form of EDS

http://www.youtube.com/watch?v=0IWYD-JgImI&feature=related
Why EDS POTS patients are so ill
9 Comments
Blank
Avatar_f_tn
  Selma,  Great idea to post Dr. Diana's video links here. I had just recently discovered The Driscoll Theory, and her website, prettyill . I know of at least one person with EDS whose life has been improved fantastically due to Dr. Diana's research. This person figured out that her worst symptoms were triggered by head movement, and after reading the info on CCSVI and EDS with POTS, found a doctor who diagnosed her with CCSVI. She recently had surgery to correct this, and has gone from a wheelchair to planning for college. No more fainting!

I printed out and gave a copy of Diana Driscoll's Theory to my son's doctor to read, but I don't really think my son's symptoms point to cranial hypertension or mast cell activation. He has symptoms of hypermobile EDS and severe postural hypotension, with tachycardia, but also has endocrine dysfunction, so difficult to figure out what's really causing his severe hypotension. He is due for another MRI soon, and his doc says they would be able to see excess CSF in subarachnoid spaces.

But I am spreading the word, where appropriate, about the Driscoll Theory. Some neurologists are starting clinical trials to test it, so there is definitely merit to the correlations.
Blank
620923_tn?1416285879

  Hi thanks, We have so many in the Chiari forum too that have EDS and related issues and it is difficult to get members to listen to me...lol...so, I was hoping that they might get something from Dr Diana.

   I am finding her theories all very fascinating and informative.
Blank
Avatar_f_tn
Enjoyed the links. Thanks 4 sharing ::)
Blank
620923_tn?1416285879

  Here is another link explaining POTS and it's relation to EDSers and Chiari.....http://prettyill.com/videos/watch/why_eds_pots_patients_are_so_ill_relief_the_driscoll_theory

Very Interesting...a must see.
Blank
Avatar_f_tn
I absolutely love Dr Diana!
Blank
Avatar_m_tn
Did anyone here try hear treatment plan? What is it by the way, diamox and antihistamines?
Blank
620923_tn?1416285879

  Hi....for the past 3 yrs my PCP has me on antihistamines.....so long b4 her theory  was public....and it does help me in several ways....1- I sleep much better...2- controlling my PND also helps my GERD/reflux ....3- overall joint pain is better as well.

Do talk with ur Drs to find out if this is something that may benefit u....and have ur Dr review the video....
I am not on DIAMOX, but was on TOPAMAX for quite some time and no longer need it. TOPAMAX is similar to DIAMOX in that they are both diuretics and help with our headaches.
Blank
Avatar_m_tn
Interesting.
What antihistamines are the best ones?
Blank
620923_tn?1416285879

  U need to ask ur Dr as to what is best for u....
Blank
Recent Activity
979826_tn?1389039958
Blank
soccero commented on photo
Dec 16
620923_tn?1416285879
Blank
selmaS commented on Flycaster305's status
Dec 16
620923_tn?1416285879
Blank
selmaS commented on photo
Dec 15
MedHelp Health Answers