Is EDS more common in Asians?
It is more prevalent among Asians and Africans than Caucasians, with women affected more often than men, and it is usually maximal at birth, decreasing with age .
Where is EDS most common?
Vascular EDS is reported to have a prevalence of 1 in 100,000 individuals, and cardiac-valvular EDS a prevalence of less than 1 in a million people. Kyphoscoliotic EDS has primarily been reported in areas of Greece, Turkey, and the Middle East.
Is EDS more common in Jews?
Some types of EDS are more common in Ashkenazi Jews. For example, the chance of being a carrier for dermatosparaxis EDS is one in 248 in Ashkenazi Jews, whereas the prevalence of this variation in the general population is one in 2,000.
What percent of the population has Ehlers-Danlos Syndrome?
The combined prevalence of all types of Ehlers-Danlos syndrome appears to be at least 1 in 5,000 individuals worldwide. The hypermobile and classical forms are most common; the hypermobile type may affect as many as 1 in 5,000 to 20,000 people, while the classical type probably occurs in 1 in 20,000 to 40,000 people.
Why are EDS patients called zebras?
According to the international Ehlers-Danlos Society, the reference to zebras is borrowed from a common expression heard in medicine: “When you hear hoofbeats behind you, don’t expect to see a zebra.” In other words, medical professionals are typically taught to look out for more-common ailments rather than testing for …
What does EDS pain feel like?
I was asked recently to describe what my body feels with EDS. I described the feeling of being tenderized with a mallet all over my body. Not enough to break bones, but hard enough to leave bruises. This is my daily experience even with the aid of pain meds.
Does Ehlers Danlos get worse with age?
Many of the problems associated with EDS are progressive, meaning that they get worse over time.
Does EDS have flare ups?
EDS is unpredictable–pain flares when I least expect it, injuries occur in the most benign situations, symptoms appear out of nowhere.
When is EDS usually diagnosed?
Symptoms range from mild to very severe, and vary with which type of EDS you have. Milder forms of EDS are often not diagnosed until early adulthood, as it can take some time before the symptoms and signs become noticeable. The more severe types, however, are diagnosed mainly in childhood.
Can you have EDS and not know it?
Many of those suffering from EDS are never diagnosed during their lifetimes. They suffer in pain for many years and die – still not knowing why they had the pain. EDS Awareness is critical! Only 5% of EDS patients are correctly diagnosed.
Do Rheumatologists treat Ehlers Danlos?
Rheumatologists and EDS The Ehlers Danlos Syndromes are categorized as “connective tissue disorders,” and it is rheumatologists who are supposed to specialize in such conditions.
What is the life expectancy of someone with EDS?
People affected by vascular EDS have a median life expectancy of 48 years and many will have a major event by age 40. The lifespan of people with the kyphoscoliosis form is also decreased, largely due to the vascular involvement and the potential for restrictive lung disease.
Can you live a full life with EDS?
EDS cannot be ‘cured’ but many people learn over time how to control it and live full and active lives. The day-to-day management of most types of EDS is based around the right kind of exercise, physiotherapy and pacing. In addition you should seek referrals for any associated conditions you may have.
Does EDS reduce life expectancy?
The most common types of EDS (classical, classical-like, and hypermobile) do not greatly affect life expectancy. However, symptoms may become more severe as patients age and joints that have been dislocated multiple times become painful. Everyone’s bones become weaker with age.
Does EDS affect the eyes?
Retinal Detachments Ehlers Danlos Syndrome patients are prone to myopia and elongated eyes due to the stretching of the collagenous sclera.