I posted the article from "The Journal" in our "EDS in the media" section.  Please have a look, it was brilliantly written by one of our founding members.
We need to celebrate in some way.  :)
 
 
I think we are just about done.
 

Progress

05/23/2012

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Over the past few days we have worked at getting more information on the site.  This is just the beginning, we have plenty of ideas so stick around.  Feel free to drop us a line and give us your input. 
 
 
Finally got the website up.  It needs plenty of editing but I am tired and am heading to bed.  I hope this venture will be a huge success.  The article below isn't by me but was part of my inspiration.


By Deborah Mitchell on December 1, 2009 for eMaxHealth

People who suffer with Ehlers-Danlos syndrome, an inherited connective tissue disease, have reported not being respected when seeking medical care. The lack of respect can have an emotional impact on these individuals that can last for many years and affect their ability to seek health care.

Ehlers-Danlos syndrome is a condition in which there is a defect
in the tissues that provide support to the body’s muscles, skin, and ligaments.
This results in unstable joints, which are the result of faulty collagen, a
protein that provides strength and elasticity to connective
tissue.

As a result, people who have Ehlers-Danlos syndrome, which affects approximately one in every 5,000 people, according to the Ehlers-Danlos National Foundation,
experience a range of unusual and painful signs and symptoms. These can include
loose/unstable joints which are prone to frequent dislocations, joint pain,
fragile skin that bruises or tears easily, severe scarring, slow and poor wound
healing, development of fleshy lesions (molluscoid pseudo tumors), chronic
debilitating musculoskeletal pain, poor muscle tone, and gum
disease.

There a six major types of Ehlers-Danlos syndrome, which are
classified according to the signs and symptoms. They include hypermobility,
classical, kyphoscoliosis, arthrochalasia, dermatosparaxis, and vascular. The
vascular type is considered to be the most serious, because there is the
possibility of organ and blood vessel rupture. The syndrome affects both males
and females of all ethnic and racial
backgrounds.

The current study, which was published in the January 2010 issue
of Disability and Rehabilitation, consisted of a questionnaire directed
at individuals who suffer from Ehlers-Danlos syndrome. The men and women
described their encounters with people in health care as “being ignored and
belittled by health-care professionals,” to “being assigned psychological and/or
psychiatric explanations,” and “being treated and considered merely as an
object.”

As a result of these experiences, the individuals noted that
they were “mistrusting the physician” and “risking bad health.” The researchers
note that health-care professionals should protect human dignity and treat each
patient as a unique human being who has the ability to master his or her own
life. To learn more about Ehlers-Danlos syndrome, you can visit the
Ehlers-Danlos National Foundation website.


SOURCES:
Berglund B et al. Disability and Rehabilitation
2010 Jan; 32(1): 1-7
Ehlers-Danlos National
Foundation




 

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