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 [1].

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.

Why do so many people have Ehlers-Danlos?

Different types of Ehlers-Danlos syndrome are associated with a variety of genetic causes, some of which are inherited and passed on from parent to child. If you have the most common form, hypermobile Ehlers-Danlos syndrome, there’s a 50% chance that you’ll pass on the gene to each of your children.

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.

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.

Does Eds make you look older?

Less wrinkles Due to the collagen in the skin being extra stretchy, many EDS patients experience a lack of wrinkles as they age. This collagen may help EDS patients look younger and can also cause skin to feel extremely soft.

Is EDS considered a disability?

If you have vascular or regular EDS with severe symptoms that prevent you from working, you may be able to get disability. Ehlers-Danlos can affect your skin, joints, and blood vessel walls; the syndrome is characterized by extremely flexible joints and very stretchy, fragile skin.

Is Fibromyalgia really EDS?

Fibromyalgia (FM) is probably the most common diagnosis given to people with CWP. However Ehlers-Danlos syndrome (EDS) (particularly hypermobile Ehlers-Danlos syndrome (hEDS) and the related hypermobility spectrum disorders (HSD)) can also present with a similar picture.

Is EDS an autoimmune disease?

Unlike the diseases noted above, Ehlers-Danlos syndrome is not an autoimmune condition, it’s an inherited disorder.

Is Fibromyalgia Real or mental?

Fibromyalgia is a condition that causes widespread pain all over the body and tender points that are sensitive to the touch. It is not considered a mental illness, but many people with fibromyalgia also experience depression and/or anxiety.

Is hypermobility linked to fibromyalgia?

In total, 43 children were found to display hypermobility and 21 fulfilled the criteria for fibromyalgia. 40 % of the 43 children with joint hypermobility also had fibromyalgia and the authors concluded by statistical analysis that the two conditions were highly associated in children.

Does hypermobility syndrome get worse?

In many cases, the joints become stiffer with age, although joint hypermobility and its associated symptoms can continue into adult life.

Is hypermobility and autoimmune disease?

This is true for autoimmune disease of the gut like Crohn’s disease or ulcerative colitis but also true of others such as rheumatoid arthritis and multiple sclerosis. It now appears that people with Ehlers Danlos Syndrome/Hypermobility Syndromes have excessive gut permeability issues as well.

Is hypermobility degenerative?

Over time, joint hypermobility can lead to degenerative cartilage and arthritis. Certain hypermobile joints can be at risk for injury, such sprained ligaments.

Does hypermobility affect teeth?

Ehlers-Danlos syndrome (EDS) can adversely impact upon the function of the mouth and in turn potentially lessen quality of life. While many people with EDS not have any notable oral problems specifically due to EDS, this connective tissue disorder can affect the teeth and gums as well as the temporomandibular joint.

How rare is hypermobility EDS?

Video: Hypermobility EDS – an update Vascular Ehlers Danlos syndrome (vEDS) is a rare disorder, estimated to affect between 1 in 50,000 and 1 in 200,000 people. It is caused by a gene mutation affecting a major protein, which causes weakness in vessel walls and hollow organs.

Why does hypermobility cause fatigue?

Fatigue in EDS Fatigue is particularly common in hypermobile EDS (hEDS). Contributing factors can include sleep disorders, muscle deconditioning (loss of muscle tone and endurance), headaches, and nutritional deficiencies. It is important to exclude other causes, such as anemia or a chronic infection.

What is the difference between Ehlers-Danlos and joint hypermobility syndrome?

While hypermobile EDS (hEDS) remains the only EDS without a confirmed cause, the criteria for hEDS diagnosis have been tightened compared to the 1997 Villefranche nosology as determined by international consensus. The essential difference between HSD and hEDS lies in the stricter criteria for hEDS compared to the HSD.

Does EDS cause brain fog?

While “brain fog” is not one of the most common symptoms of Ehlers-Danlos syndrome (EDS), many patients report experiencing this form of cognitive dysfunction, which can affect their ability to focus, learn, retain information, and maintain employment.

Is chronic fatigue a symptom of EDS?

Fatigue may be a major symptom in hypermobile type Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorder (HSD).