Welcome!

Welcome and thank you for taking the time to view Ehlers Danlos Family Contributions blog. 

There are many reasons to help families in need with ehlers danlos syndrome. Lets begin by defining this connective tissue disorder. 

What Is Ehlers-Danlos Syndrome?

Ehlers-Danlos syndrome (EDS) is an inherited condition that affects the connective tissues in the body. Connective tissue is responsible for supporting and structuring the skin, blood vessels, bones, and organs. It is made up of cells, fibrous material, and a protein called collagen. Ehlers-Danlos syndrome is caused by a defect in collagen production. This condition is caused by a group of genetic disorders.


There are six major types of Ehlers-Danlos syndrome:
arthrochalasia
classic
dermatosparaxis
hypermobility
kyphoscoliosis
vascular


The area affected differs with each type of EDS. However, they all have one thing in common: hypermobility. Hypermobility is an unusually large range of movement in the joints.


The hypermobility and classic types of Ehlers-Danlos syndrome are the most common. The other types are rare, with the dermatosparaxis type affecting only 12 children on record worldwide. According to the Genetics Home Reference, EDS is seen in 1 in 5,000 people worldwide (Genetics Home Reference, 2006).


Reference



Now we will continue by discussing challenges related to Ehlers Danlos Syndrome



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.

If you are in a position to improve the quality of life for 

people having this condition please act today!


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