What is the life expectancy of someone with Ehlers Danlos?

Life expectancy of people with Ehlers Danlos and recent progresses and researches in Ehlers Danlos

Ehlers-Danlos syndrome (EDS) is a group of genetic disorders affecting connective tissues, which provide support to various body parts. The life expectancy of individuals with EDS can vary significantly depending on the specific subtype and severity of the condition. While some individuals with milder forms of EDS have a normal lifespan, others may experience complications that can impact their longevity. These complications may include cardiovascular issues, organ rupture, or respiratory problems. It is crucial for individuals with EDS to receive proper medical care, manage symptoms, and adopt a healthy lifestyle to optimize their overall well-being and potentially extend their life expectancy.

Ehlers-Danlos syndrome (EDS) is a group of genetic disorders that affect the connective tissues in the body. These tissues provide support and structure to various organs, joints, and blood vessels. EDS is characterized by a defect in the production or structure of collagen, a key component of connective tissues.

There are several subtypes of EDS, each with its own unique features and severity. The most common types include hypermobile EDS (hEDS), classical EDS (cEDS), and vascular EDS (vEDS). The life expectancy of individuals with EDS can vary significantly depending on the subtype and associated complications.

Hypermobile EDS (hEDS):

hEDS is the most common subtype of EDS, characterized by joint hypermobility, chronic pain, and skin involvement. While hEDS can significantly impact an individual's quality of life, it typically does not affect life expectancy. With proper management and care, individuals with hEDS can have a normal lifespan.

Classical EDS (cEDS):

cEDS is characterized by skin hyperextensibility, joint hypermobility, and increased fragility of tissues. The life expectancy of individuals with cEDS is generally normal. However, complications such as organ rupture or involvement of major blood vessels can pose serious risks and may impact life expectancy in some cases.

Vascular EDS (vEDS):

vEDS is the most severe and potentially life-threatening subtype of EDS. It is characterized by fragile blood vessels, which can lead to spontaneous arterial or organ rupture. The life expectancy of individuals with vEDS is significantly reduced compared to other subtypes. Studies suggest that the average life expectancy for individuals with vEDS is around 50 years, although some individuals may live longer with proper management and surveillance.

Other Subtypes:

There are other rare subtypes of EDS, such as kyphoscoliotic EDS, arthrochalasia EDS, and dermatosparaxis EDS. These subtypes can have varying effects on life expectancy depending on the severity of associated complications. It is important for individuals with these subtypes to work closely with healthcare professionals to manage their condition and address any potential risks.

Management and Outlook:

While EDS can present challenges and potential complications, early diagnosis, proper management, and regular medical care can greatly improve the quality of life for individuals with EDS. Treatment approaches may include physical therapy, pain management, joint protection strategies, and genetic counseling.

It is important to note that each individual's experience with EDS is unique, and the impact on life expectancy can vary. Regular medical follow-ups, adherence to treatment plans, and a supportive healthcare team are crucial in managing EDS and optimizing overall health and well-being.

Diseasemaps

Posted Apr 11, 2017 by Montana 1670

For most types of EDS, life expectancy isn't affected much. Vascular EDS has a lower life expectancy, but it depends on a person's treatment.
Problems with the aorta and other vascular problems are a main cause of death in people with EDS and can happen in a person with any type of EDS.

Posted May 10, 2017 by stairphobe 3070

It depends of the type of EDS. EDS vascular type is the most dangerous type because it involves arteries and blood vessels. EDS type Hypermobility has the same life expectancy as "regular" people. Of course you'll have a life with more pain but doesn't necessarily means you'll live less time.
Since there are so many EDS types, one cannot answer this question as if only a type existed.

The thing that might complicate more the life of a person with EDS is not being diagnosed.

Posted May 25, 2017 by Maria 2051

Depending on the type of eds you could live a long happy life or your life could be cut short.

Posted May 27, 2017 by Jude 2050

Some people barely make it to there 30s due to complications and others have a full life-span of an average person.

Posted May 27, 2017 by Ashley 950

Normal life expectancy for all eds form except for vascular eds.

Posted May 28, 2017 by Celi 2000

Some types of Ehlers Danlos have a high prevalence consortia dissection. People with those types usually die white young, probably without a diagnosis. The most common type, Hypermobiltiy, does not have any relation to lifespan.

Posted May 31, 2017 by KathrynOConnor 2200

For someone with my type of EDS there is no life endangerment with EDS for Hypermobility.

Posted Sep 27, 2017 by Lbond94 4100

Depending on the form of eds you can have a shortened life span but the most common type you live a general long life

Posted Oct 6, 2017 by Sasha 2050

It varies depending on which type of ehlers danlos

Posted Oct 7, 2017 by Sharon 7050

No clear answer. Those with Vascular EDS are faced with more life threatening issues. There are several factors and multiple scenarios that can complicate prognosis; which collagen genes are affected?, are there other genetic mutations involved?, does the patient have polymorphisms that are contributing to the condition? In my family, the heart, kidneys, pancreas are especially affected causing early deaths. Mom at 42, brothers at 21 and 43, grandparents passed in their 60s.

Posted Oct 25, 2017 by Dolores 3050

for vEDS between 25-mid 40s (please CRISPR researchers hurry up for us!)
for other subtypes it's more complicated since your lifespan is normal but your quality of life is what suffers, and complications can happen that wouldn't otherwise happen that can kill you pretty quickly.

Posted May 26, 2018 by Danielle 1500

Most types it is normal how ever typer 4 or vascular Ehlers Danlos syndrome is 50

Posted Sep 29, 2019 by Amy 13500

Life expectancy can be shortened for those with the Vascular Ehlers-Danlos syndrome due to the possibility of organ and vessel rupture. Life expectancy is usually not affected in the other types.

Posted Mar 11, 2020 by MegTheMariner 1870

Hypermobile type expectancy is the same as a well person. The vascular type can be in the 40s due to cardiac problems.

Posted May 12, 2020 by Alex 3551

With vascular it is usually till about 8:47 ish otherwise depending on which type you have and other symptoms you could live a normal life span usually patients have other conditions along with ehlers-danlos syndrome

Posted Nov 19, 2021 by NuNu 2550

Translated from spanish Improve translation

It depends on each case, and the truth, no one knows surgery some which is the.peomostico of life of a person with Ehlers Danlos syndrome. Not on any progress

Posted Mar 25, 2017 by Paula Lopez 1151

Translated from french Improve translation

The most common type of SED has no influence on life expectancy. For the vascular-type a impact, of the various circulatory problems.
New criteria have been established for the diagnosis of Sed , the criteria of New-York. They will result can be an improvement of the care of the sick.

Posted Aug 16, 2017 by Apolline 1205

Translated from french Improve translation

The majority of patients with the syndrome of Ehlers danlos syndrome suffering form hypermobile. In this case, there is little (very little) risk of premature death.
The form vasculature is more problematic because the fragility is then on the blood vessels with risk of aneurysms, rupture of the venous wall... This form is to monitor very closely

Posted Aug 17, 2017 by Sandrine 1790

Translated from french Improve translation

The life expectancy is only a number. A healthy person can die of anything at any time. The sed touches the base the same cells. The deficiency of collagen leads to the joints and muscles fragile. The thin skin promotes bleeding and the resistance to painkillers and anesthesia make each intervention more dangerous. The heart is a muscle to preserve and conserve. Life expectancy may appear to be more short report, especially with all of this. The surgeries are to be avoided because inconclusive, and the anesthesia is ineffective unless you increase the dose.
The compression garments (based on the manufacture of those of large burns ) to help maintain the joints. Oxygen therapy no longer has to make its evidence and corsets for the back relieve a lot. Even at the level of drug treatment associations work well (melatonine, levocarnil etc...) there is no treatment for the sed, but full of small things that improve the comfort , the mattress medical, ortheses blister, the oxygen, the discomfort is known. The hope for future generations is there.

Posted Aug 30, 2017 by Ehos 1050

Translated from portuguese Improve translation

Usually people with this sindorme die normally, unless the possuintes of the type vascular. That can take the average of 58 years of life.

Posted Aug 30, 2017 by Kayla Rarine 2000