What is the Life Expectancy of an Ehlers-Danlos Syndrome Sufferer?

Ehlers Danlos Syndrome(EDS) is a tissue disorder that is inherited. It affects collagen in the body, meaning it can detrimentally affect the body. It can cause people to have loose and unstable joints. It can also affect the skin and make it difficult for the skin to heal properly. Due to the effects that EDS has it unfortunately does have a significant effect on life expectancy.

Life expectancy of EDS sufferers tends to be around 40 years of age. However, this isn't set in stone. Depending on the severity of EDS, life expectancy can be longer. Since EDS is a genetic disorder, it was assumed that if the dominant gene is passed down then this person will suffer with EDS. Though this isn't the only case of EDS. There are two different types of dominant genes that can be passed down; Polysemic and Autosomal. Depending on your genes, EDS could be more or less severe; meaning some people may live longer and others, unfortunately may not.

Other things that can affect the life expectancy of an EDS sufferer is how much strain they put on themselves. Due to the nature of EDS it is very easy to hurt your joints and even an injury that might seem harmless to a normal person may be difficult for an EDS sufferers body to repair. This is why they should stick to activities that involve minimal labor and stick to low risk hobbies.

There is currently no cure for EDS. However there is hope, studies have shown positive outcomes in the use of Doxycycline on mice. There are other studies, such as preliminary research with the drug Celiprolol. Younger EDS sufferers should have hope for a longer life expectancy as modern medicine is advancing at an astounding rate and even these small studies of mice show hope for the future. Some EDS sufferers have found relief in physical therapy. Though this does not cure EDS it can prevent further joint damage, meaning an increase in life expectancy. Although not common, sometimes surgery can help with the joints too.

Like I said earlier, those with EDS tend to live into their 40's. Though with surgery and therapy EDS sufferers can live into their 50's, 60's and in some cases even later.

Sufferers of EDS will have to come to terms with their disorder and its effects on their life and life expectancy. This doesn't mean they cannot live a joyous and prosperous life. It just means it may be a bit shorter than other peoples. EDS sufferers shouldn't let their disorder take over their life. Even if they are less mobile there are wheelchairs, therapy like I mentioned earlier and clinical trials. The modern day and age allows people with disorders such as these to be able to live their life to the fullest even though it may not be perfect. People with EDS can still travel, go to school, have hobbies and more. They just need to have a good outlook on life and not let their life expectancy interfere with the time they do have to live and be happy!