Will EDS Affect my Life Expectancy?

Will EDS Affect my Life Expectancy?
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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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Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

Emily holds a Ph.D. in Biochemistry from the University of Iowa and is currently a postdoctoral scholar at the University of Wisconsin-Madison. She graduated with a Masters in Chemistry from the Georgia Institute of Technology and holds a Bachelors in Biology and Chemistry from the University of Central Arkansas. Emily is passionate about science communication, and, in her free time, writes and illustrates children’s stories.
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Özge has a MSc. in Molecular Genetics from the University of Leicester and a PhD in Developmental Biology from Queen Mary University of London. She worked as a Post-doctoral Research Associate at the University of Leicester for six years in the field of Behavioural Neurology before moving into science communication. She worked as the Research Communication Officer at a London based charity for almost two years.
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Emily holds a Ph.D. in Biochemistry from the University of Iowa and is currently a postdoctoral scholar at the University of Wisconsin-Madison. She graduated with a Masters in Chemistry from the Georgia Institute of Technology and holds a Bachelors in Biology and Chemistry from the University of Central Arkansas. Emily is passionate about science communication, and, in her free time, writes and illustrates children’s stories.
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