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Genetic Disorders Forum
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EDS

I would like to know if there have been any break through for EDS.  My daughter is 8 years old and was diagnosed with EDS about 3 years ago down at Columbia in NYC.  She has the soft doughy skin that tears easily and had received stitiches 7 times.  Also poor healing and wide atrophic scars. along with some other characteristics.  I go to Columbia for an appointment to evaluate her again.  She probably will need to be tested for vascular EDS which I dread.

Anyway please update me on any new information that might be available.
Terry Doherty
2 Responses
264002 tn?1193278955
MEDICAL PROFESSIONAL
As you know, Ehler-Danlos syndrome (EDS) is a group of disorders that affect the connective tissue.  There are many different types of EDS including Hypermobility, Classical, and Vascular.  They are each distinct conditions, but there can be some overlap with features such as stretchy skin, hypermobile joints, and trouble with wound healing.  

Regularly seeing a doctor with an expertise in EDS may help you stay aware of the latest advances for this condition.   It is good to hear that you and your daughter have another appointment with her doctor.  

One advance in the field has been determining the cause of a particular type of EDS.  Some research has been done in the past few years to determine if other proteins besides a specific type of collagen are associated with EDS.  It was found that some people with EDS have a reduced amount of a protein called tenascin-X.  Testing for this type of EDS can be done with a blood sample.  You may want to talk to your daughter’s doctor to see if this test is indicated for her.  

Testing for the vascular type of EDS is typically done with a skin biopsy.  Generally, this test is performed in a physician’s office under local anesthesia.   The testing process can sometimes be difficult for families because of the serious complications of vascular EDS.  It may help to talk with other families who have been through this before by contacting the Ehlers-Danlos National Foundation.  
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A related discussion, EDS or Loeys Dietz??? was started.
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