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.

What are the symptoms of EDS in humans?

Joint pain (arthralgia) and deformity; muscle pain (myalgia), and nerve pain (neuralgia); loose/unstable joints which are prone to frequent dislocations and/or subluxations and injury; muscle tension and weakness; weakness of the voice box and larynx; hernias; pelvic floor weakness and prolapses of the rectum, bladder …

Is EDS a serious condition?

Vascular EDS (vEDS) is a rare type of EDS and is often considered to be the most serious. It affects the blood vessels and internal organs, which can cause them to split open and lead to life-threatening bleeding. People with vEDS may have: skin that bruises very easily.

Is EDS life-threatening?

Ehlers-Danlos syndrome is a group of disorders that affect connective tissues supporting the skin, bones, blood vessels, and many other organs and tissues. Defects in connective tissues cause the signs and symptoms of these conditions, which range from mildly loose joints to life-threatening complications.

Does EDS worsen with age?

Many of the problems associated with EDS are progressive, meaning that they get worse over time.

What triggers EDS?

Causes. EDS happens when your body doesn’t make a protein called collagen in the right way. Collagen helps form the connections that hold your body’s bones, skin, and organs together. If there’s a problem with it, those structures can be weak and more likely to have problems.

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.

Is EDS high risk for Covid?

For a person with EDS or HSD the risk of getting complications from covid-19 will depend on the nature of that persons’ specific health concerns. Some people may have one or more of the risks listed. But many people with EDS or HSD will not have these risk factors.

How painful is Ehlers-Danlos syndrome?

Ehlers-Danlos syndrome tends to result in chronic pain and discomfort, often in the joints, muscles, or nerves. It can also cause stomach problems and headaches. Medication can be a crucial part of a pain management strategy for many people with Ehlers-Danlos syndrome.

Is EDS 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.

Are you born with Ehlers-Danlos Syndrome?

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.

Can you get EDS later in life?

Although Ehlers-Danlos syndrome (EDS) is a condition you are born with, it may take many years (or decades) before you are diagnosed. During childhood, it might just seem like you’re more flexible or prone to sprains and injuries than the other kids.

At what age is EDS diagnosed?

My geneticist told me that it often takes an average of 10 to 20 years to receive a diagnosis of EDS, with many people not receiving an accurate diagnosis until well into their 40s. As with many medical conditions, EDS disproportionately impacts women.

Is Ehlers-Danlos a terminal?

Vascular Ehlers-Danlos syndrome is a rare, life-threatening, autosomal dominant variant of EDS, resulting from mutations in COL3A1 gene. Affected individuals are prone to serious and potentially fatal complications, especially vascular, intestinal, and uterine ruptures.

Is EDS degenerative?

Recognizing Ehlers-Danlos Syndrome This disorder causes progressive deterioration and degeneration of connective tissue in joints, spine, eye, gums, teeth, internal organs, and central nervous system (CNS). Patients with the severest form of this genetic disease seldom live past 50 years of age.

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.

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.

Can you lift weights with EDS?

In general, EDS patients should avoid high-impact exercises such as running, and sports that carry a high risk of injury due to impact. For example, weightlifting places pressure on locked joints and should be avoided.

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.

What serious health problems can come with EDS?

There are many neurological and spinal problems which have been observed to be more common in EDS, examples include migraine, early disc degeneration, Chiari 1 malformation, craniocervical instability, motor delay, and curvature of the spine. Musculoskeletal pain can start early and be chronic.

How do you get diagnosed with EDS?

How do doctors diagnose Ehlers-Danlos syndrome?

1. Genetic testing: The most common way to identify the condition is to look for a faulty gene.
2. Biopsy: In some cases, a doctor will use a test called a biopsy. …
3. Physical exam: During a physical exam, doctors can see how much the skin stretches and how far the joints can move.

Can people with Ehlers-Danlos have kids?

Overall, pregnancy is well tolerated in hEDS. Possible complications are mainly attributable to joint hypermobility, skin and tissue fragility and abnormal collagen in blood vessels. It is generally a benign condition and the majority of women tolerate pregnancy well with good outcomes.

Can you have EDS and MS?

Many patients with connective tissue disorders (Ehlers-Danlos Syndrome) develop Multiple Sclerosis and studies indicate that in the Multiple Sclerosis population, there exists over 10% more Ehlers-Danlos patients than in the normal population.

Is Ehlers-Danlos a chronic illness?

Chandelier singer Sia has revealed she has a rare genetic condition called Ehlers-Danlos syndrome that results in chronic pain. The disease affects 1 in 5,000 people globally. It causes hypermobile joints, loose, stretchy skin, and ongoing fatigue, which makes someone more prone to injury and chronic pain.

Should people with Ehlers Danlos get vaccinated?

In general, having HSD or EDS is not considered at this time a high risk. However, if for any reason (which may or may not be related to your HSD or EDS) you have one of the high or moderate risks listed, then your case would likely be considered a priority for COVID-19 vaccination and you should talk with your doctor.

Is Ehlers Danlos contagious?

Is EDS contagious? No, EDS is not contagious.

Can Covid cause POTS Syndrome?

Some researchers believe that coronavirus can be a trigger for POTS, as an increased number of people who recovered from COVID-19 are now experiencing POTS-like symptoms, such as brain fog, tachycardia (increased heart rate) and severe chronic fatigue.

Did Elvis have Ehlers Danlos?

He was a baffling medical case for the doctors in Memphis at that time, and we didn’t know what he had up until about three or four years ago. We did not understand the genetic collagen connective tissue disorders, now usually referred to by doctors as Ehlers Danlos syndrome (EDS).

What is Zebra syndrome?

Ehlers-Danlos syndrome is considered a rare condition and so EDS sufferers are known as medical zebras. This identity has now been adopted across the world through social media to help bring our community together.

What does an EDS flare up feel like?

Day 4 of the Photo-A-Day Challenge – What does a flare up (of symptoms) look like for you? A flare up with EDS for me is extreme pain with my joints, a low grade fever, and subluxations of my fingers and other joints. Today you are actually witnessing one of the longest flares I’ve had since being diagnosed.