Friday, October 12, 2012

31 Days of Awareness: Ehlers-Danlos Syndrome

Ehlers-Danlos Syndrome

Awareness Color: Distinctive zebra ribbon
Awareness Month: May

Ehlers-Danlos syndrome (EDS) is a heterogeneous group of heritable connective tissue disorders, characterized by articular (joint) hypermobility, skin extensibility and tissue fragility. There are six major types of EDS. The different types of EDS are classified according to their manifestations of signs and symptoms.


Symptoms of EDS include:
  • Double-jointedness
  • Easily damaged, bruised, and stretchy skin
  • Easy scarring and poor wound healing
  • Flat feet
  • Increased joint mobility, joints popping, early arthritis
  • Joint dislocation
  • Joint pain
  • Premature rupture of membranes during pregnancy
  • Very soft and velvety skin
  • Vision problems

    The outlook for individuals with EDS depends on the type of EDS with which they have been diagnosed. Symptoms vary in severity, even within one sub-type, and the frequency of complications changes on an individual basis. Some individuals have negligible symptoms while others are severely restricted in their daily life. Extreme joint instability and scoliosis may limit a person^s mobility. Most individuals will have a normal lifespan. However, those with blood vessel involvement, particularly those with EDS vascular type, have an increased risk of fatal complications.

    EDS is a lifelong condition. Affected individuals may face social obstacles related to their disease on a daily basis. Some people with EDS have reported living with fears of significant and painful skin ruptures, becoming pregnant (especially those with EDS vascular type), their condition worsening, becoming unemployed due to physical and emotional burdens, and social stigmatization in general.

    Constant bruises, skin wounds, and trips to the hospital take their toll on both affected children and their parents. Prior to diagnosis parents of children with EDS have found themselves under suspicion of child abuse.

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