Ehlers-Danlos Syndrome Awareness

My wife and I are great friends with a couple who have a daughter with Ehlers-Danlos Syndrome (EDS).  This, my friends, requires no less than a Super-Hero like existence to live with.  Hearing the stories that our friends have shared with us about raising their daughter with EDS illuminate an awareness of parental perception that is hard to imagine. 

EDS is a connective tissue disorder.  The connective tissue is used to hold together and stabilize your skin, muscles, ligaments blood vessels and internal organs.  Collagen is a protein which adds strength and elasticity to connective tissue, like glue.  Different hereditary gene mutations may cause problems with the collagen, which may lead to EDS.

EDS is characterized by a stretchy, soft, velvety skin which is very easy to tear.  Bruising may be very easy and quite common and cuts may take an extended time to heal.  It common for stitches to tear out of the skin after wounds has been sutured. 

The joints of a person with EDS may be hyper-mobile.  It is common to see frequent dislocations of joints and the joints regularly move beyond the normal range of motion.  Joint pain is quite common and early onset osteoarthritis is far too regular an issue.

Less common symptoms can occur when someone has the vascular type of EDS which affects internal organs and blood vessels.

Life expectancy is usually not effected by EDS, unless the individual has the vascular type.  With the vascular type it is possible that life expectancy will be shortened due to organ or vessel rupture.

EDS is divided into six categories based upon their specific symptom type.  The specific symptom type, or category, will not change when passed on to the next generation.    Specifics regarding the chance and pattern of inheritance are available through information websites.

It wasn’t until the late 1960’s that EDS was first categorized.   As recently at 1997 a final description of the different categories and diagnostic criteria of EDS was published.  There is no current cure or treatment for EDS.  The only resolution is to treat symptoms as they appear.  

Vigilant lifestyle awareness is imperative at maintaining a long and healthy life with EDS.

Ehlers-Danlos National Foundation

U.S. National Library of Medicine

Please take the time to share this blog with your friends, Ehlers-Danlos Syndrome needs awareness, and please comment if you have any EDS stories to share!

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