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What is Ehlers-Danlos Syndrome?

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  • Written By: D. Jeffress
  • Edited By: Bronwyn Harris
  • Last Modified Date: 30 August 2016
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Ehlers-Danlos syndrome is a rare genetic disorder that appears when the body is unable to produce enough collagen to form normal connective tissue. People with Ehlers-Danlos syndrome may experience a number of unique symptoms, such as extremely flexible joints and unusually elastic skin. Certain health problems can arise, such as joint pain and instability, muscle weakness, heart problems, and surgical complications. Ehlers-Danlos is not curable, though individuals who receive appropriate treatment and manage their condition with care can usually live quite normal lives.

There are six recognized types of Ehlers-Danlos syndrome, though symptoms and complications are similar for each type. Individuals typically have very flexible joints that allow for an extended range of motion. Smooth skin that can be stretched is also common in most types. Many people have frail, thin skin that can tear, bleed, and bruise easily. Individuals with vascular Ehlers-Danlos often have very fragile blood vessels in addition to the other symptoms of Ehlers-Danlos.

Several complications can arise as a result of Ehlers-Danlos syndrome. Flexible joints are often very unstable and may become strained or dislocated with little effort. Many people suffer from muscle weakness and early-onset osteoarthritis as a result of poor joint functioning and a lack of stabilizing connective tissue. Individuals are at a much higher than average risk of developing hernias and experiencing ruptured veins, arteries and heart valves. Major internal bleeding can occur, which can be life-threatening.

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Surgical complications are common in people with Ehlers-Danlos. It can be difficult for surgeons to make precise incisions on overly elastic skin tissue and sew up the resulting scars. Since stitches, staples, and other medical adhesives are likely to be ripped out of fragile skin, many people do not completely heal from their surgeries. Permanent scarring from surgical wounds and other abrasions is common in Ehlers-Danlos patients.

When a person shows any symptoms of Ehlers-Danlos syndrome, he or she should consult a doctor immediately so the proper diagnosis can be made and a treatment plan can be initiated. The disorder cannot be cured, but medical experts can help patients develop long-term Ehlers-Danlos management strategies. Some individuals take regular doses of pain medication to ease discomfort from joint pain and arthritis symptoms. Physical therapy can help build muscle mass and establish stronger, more stable joints. Most people with Ehlers-Danlos syndrome are able to enjoy independent lifestyles, so long as they take care to manage their condition according to doctors' orders.

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