The overall prevalence of Ehlers-Danlos syndromes (EDS), is considered to be 1 in 5000 (Pyeritz, 2000) which is considered to be rare around the world.
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 EDS be a disability?
Can I Get Disability For Ehlers-Danlos Syndrome (EDS)? The answer is that Ehlers-Danlos Syndrome (EDS) can be a disabling condition, depending on how it presents. EDS is a genetic disorder affecting connective tissues and causing an array of serious physical problems, ranging from joint pain to cardiovascular issues.
Does EDS get worse with age?
Many of the problems associated with EDS are progressive, meaning that they get worse over time.
Does EDS make you skinny?
Ehlers-Danlos syndrome (EDS) is a disease that weakens the connective tissues of your body. These are things like tendons and ligaments that hold parts of your body together. EDS can make your joints loose and your skin thin and easily bruised.
Why is EDS called zebra?
The EDS community adopted the zebra as its mascot because sometimes when you hear hoofbeats, it really is a zebra. In this spirit, The Ehlers-Danlos Society includes patients, caregivers, health care professionals and supporters working towards a time when a medical professional immediately recognizes someone with …
Does Ehlers-Danlos shorten your life?
Patients with the classical and hypermobility forms of Ehlers-Danlos syndrome have a normal life expectancy. About 80% of patients with vascular Ehlers-Danlos syndrome will experience a major health event by age 40 and the life expectancy is shortened, with an average age of death of 48 years.
Is EDS a sleep disorder?
EDS patients are known to suffer from significant sleep problems and excessive daytime sleepiness. EDS-features such as increased pharyngeal collapsibility have been proposed to cause obstructive sleep apnea (OSA), however this has not been investigated.
Is EDS a terminal illness?
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.
Will I end up in a wheelchair with EDS?
Some patients with EDS may require specialized mobility devices, such as a wheelchair or a scooter, and a walker, crutches or a cane for mobility. However, care should be taken so that joints and other areas of the body affected by the disease are not injured by shifting weight when, say, walking with a cane or crutch.
What foods to avoid if you have Ehlers-Danlos Syndrome?
What foods should I avoid? Decrease your intake of foods and beverages containing processed sugar such as pastries, bread, and soda or cola drinks. It’s also important to decrease the amount of cholesterol and saturated fat that you take in, by reducing eggs, whole milk, cheese, and fried foods.
Is hypermobility linked to autism?
In addition, a 2016 study performed in Sweden indicated that people with EDS are more likely to have a diagnosis of autism than individuals without the condition. Other research has also shown that autistic people have higher rates of joint hypermobility in general, a major feature of EDS.
Does EDS show on MRI?
MRI can help detect lesions in the brain containing collagen fibers, which are often seen in EDS patients who previously experienced trauma.
What kind of doctor manages 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.
Can EDS go away?
There is no cure for Ehlers-Danlos syndrome, but treatment can help you manage your symptoms and prevent further complications.
Can EDS affect periods?
Menstruation with EDS A survey of women with EDS reported that only 32.8% of patients had a normal menstrual cycle. About 18% of patients had bleeding between periods. Nearly 33% of patients had a heavy menstrual flow.
Does EDS affect hair?
Ehlers-Danlos syndromes primarily affects the skin, hair, and skeletal system. Symptoms usually begin by childhood or adolescence. Like people with other types of EDS, people with Spondylodysplastic EDS have unusually flexible joints; loose, elastic skin; and easy scarring.
Does EDS affect nails?
Abnormalities of the nails are frequently seen in clinical practice although there has been no specific study of these in people with EDS. Difficulty with hand function, coupled with painful upper and lower limb joints, may also make it difficult for someone to reach and cut their toenails.
Is EDS an autoimmune disease?
A much rarer group of connective tissue disorders is called Ehlers-Danlos syndrome. Unlike the diseases noted above, Ehlers-Danlos syndrome is not an autoimmune condition, it’s an inherited disorder.
What is the difference between hypermobility syndrome and Ehlers-Danlos?
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.
Are you born with EDS?
EDS is something you are born with but symptoms may not manifest themselves until later in life. It is not uncommon for a genetic condition to first become apparent during puberty, alternatively symptoms can be triggered by a trauma, such as a virus, many years down the line.
Does EDS 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.
Does EDS cause vitamin D deficiency?
Vascular type Ehlers-Danlos syndrome is associated with platelet dysfunction and low vitamin D serum concentration.
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.
Does vitamin C help EDS?
Ascorbic acid (Vitamin C) may be recommended to help reduce the easy bruising that accompanies EDS. Hypermobile joints easily dislocate. With each dislocation, subsequent dislocations are increasingly likely, therefore prevention is particularly important for quality of life.