It is time.
One blog featuring families in need who have Ehlers Danlos Syndrome has been created. The mission of the blog is to provide one stop to find a way to donate to the various nonprofit centers for research to find a cure as well as individual families who need help.
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"1. Lack of information from doctors world wide. People with Ehlers Danlos Syndrome usually travel many miles to seek treatment due to scarce familiarity with the condition.2. Systemic problems occur. Very few people or none with Ehlers Danlos Syndrome have no other medical problems diagnosed. The other diagnosis' are often but not always secondary diagnosis to the Ehlers Danlos Syndrome.
3. Often people with Ehlers Danlos Syndrome are minimized. They are told the problems, being so many, are all in their head. Many have been diagnosed with psychiatric disorders that do not fit them.
4. People with the Vascular type of Ehlers Danlos Syndrome have a lower life expectancy. People with any type are at risk for life threatening complications."
The hope is that for every $20.00 donated to the cure research that $1.00 is donated to one of the families currently struggling with this debilitating systemic congenital condition to aid them to a better quality of life. Such families are found along the right side of the blog.
This community really needs your help!
