Ehlers-Danlos Syndrome or EDS

By Mikel Betancourt, PTA

What is Ehlers-Danlos Syndrome (EDS)?

Ehlers-Danlos syndrome or EDS, is a group of genetic disorders that affects your connective tissue all over your body. This syndrome can affect the skin, joints, and blood vessels, as well as other systems in one’s body depending on which genes are affected. There are currently 13 types of Ehlers-Danlos Syndrome, most of which are rare but can be life-threatening.

Doctor holding a zebra print ribbon for Ehlers-Danlos Syndrome (EDS). JOI Rehab

Image of Ehlers-Danlos Syndrome or EDS

Symptoms of EDS

Symptoms can include:

  • Hyperflexible joints which can lead to dislocations.
  • Translucent and elastic skin that bruises easily.
  • In severe cases, blood vessels can rupture causing internal bleeding.

These symptoms can differ depending on the type of EDS. For example, Brittle Cornea Syndrome affects the connective tissue in your eye (cornea) which can rupture leading to blindness.

Life Expectancy for Someone with EDS

Typically, people with Ehlers-Danlos Syndrome can live full lives with some precaution. Vascular EDS is the most life-threatening since someone’s arteries, muscles, and internal organs are affected and become fragile and are prone to rupturing and leading to death. Life expectancy for someone with Vascular EDS is 50 years.

Another variant is Kyphoscoliotic EDS which is characterized by kyphoscoliosis, a sideways curvature of the spine. This is in combination with a hunchback. Due to the nature of this variant your walking ability may be affected. After 20 years of age these complications from the spinal structure begin to put stress on internal organs and can also lead to death. later in life.

Infographic on Ehlers-Danlos Syndrome (EDS). JOI Rehab

Infographic on Ehlers-Danlos Syndrome or EDS

Types of EDS

As stated above, there are 13 types of Ehlers-Danlos Syndrome. The most common is Hypermobile EDS which affects about 1 in 5000 people. Typical symptoms include smooth, fragile skin and hypermobile joints. Bone issues are prevalent including scoliosis and osteoarthritis. The rarest form of Ehlers-Danlos Syndrome is Periodontal EDH, characterized by periodontitis. Periodontitis is an infection of the gums, usually leading to loss of teeth and typically appears early in someone’s life.

Treatment for Ehlers-Danlos Syndrome

There is currently no cure for Ehlers-Danlos Syndrome. Physical Therapy can be an effective treatment for someone with a diagnosis of EDS. Strengthening of the musculature surrounding joints with the goal of improving stability can help with dislocations due to the hypermobility of their joints. A recommendation for braces can also be useful to help decrease dislocations. High impact activities like running or plyometrics are not recommended since they put such high stress on joints which may be unstable.

Written By: Mikel Betancourt, PTA

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