Will EDS Affect my Life Expectancy?

Emily Malcolm, PhD avatar

by Emily Malcolm, PhD |

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Being diagnosed with a genetic medical condition like Ehlers-Danlos syndrome (EDS) can be difficult and worrying. One of the first questions patients usually ask is what the diagnosis means for their future and how the disease is going to affect their life expectancy.

What is life expectancy?

Life expectancy is an estimate of how long people will live. It is based on their date of birth, where they live, their gender, and other factors. It does not refer to individuals, but to the population as a whole.

How does EDS affect life expectancy?

The effect that this genetic tissue disorder has on life expectancy depends on the type of EDS the patient has.

For example, the life expectancy of people with vascular EDS — a type characterized by fragile arteries, muscles, and internal organs — can be severely reduced, with most patients having a serious medical event by the time they are 40. The median life expectancy for individuals with vascular EDS is around 48 years.

Patients with kyphoscoliotic EDS — whose hallmark is a sideways curvature of the spine in combination with a hunched back — also may have a reduced life expectancy. This can be because of vascular symptoms, or increased risk of lung problems.

For people with other types of EDS, life expectancy is usually not affected.

What could reduce life expectancy in EDS?

Many people with EDS have easily dislocated joints and fragile skin, which is readily damaged. Accidents or injuries may, therefore, be more likely to be life-threatening for these individuals.

For those with vascular involvement, the blood vessels are more likely to rupture, with or without cause. These ruptures can be very dangerous, especially if they occur when medical help cannot be reached quickly. Such complications also reduce life expectancy.


Last updated: Feb. 10, 2020


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