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What is Ehlers-Danlos Syndrome (EDS)?

Ehlers-Danlos syndrome

Ehlers-Danlos syndrome (EDS) refers to a group of genetic disorders that affect the skin, connective tissue and other soft tissue in the body. Of the major types of EDS, the most common form is known as hypermobile EDS which is associated with hyper mobility in the joints and skin that can cause joint pain, instability, bruising and bleeding among other symptoms. 

There is currently no cure for EDS, but it is possible to successfully manage this condition through lifestyle changes and conservative therapies. By learning more about EDS, we hope you can be more engaged with your treatment journey as you work with your treatment team to achieve the best possible outcome for this condition. 

At USA Spine Care & Orthopedics, we’re passionate about delivering exceptional patient care and we encourage you to reach out with any questions as you read over the following helpful guide. 

Types of Ehlers-Danlos syndrome

Depending on the classification system used, there have been up to 13 types of Ehlers-Danlos syndrome identified by medical researchers. Traditionally, EDS was classified with a system using roman numerals to indicate the type. More recent classification systems use descriptive terminology to indicate the type of EDS being diagnosed and treated. 

The type of EDS varies depending on the specific area or system of the body affected as well as the symptoms that develop. Two of the most well known forms are the hypermobile EDS mentioned above and a serious form known as vascular EDS. With vascular EDS, patients can experience rupturing in their blood vessels, including the Aorta, that can be potentially fatal. Other forms of EDS can affect the eyes and organs.

Symptoms of Ehlers-Danlos syndrome

Symptoms of EDS vary depending on the type. Commonly reported symptoms, particularly for classical and hypermobile EDS, include:

  • Hyper mobility in the joints — Because EDS is associated with looseness of connective tissue, the joints are often able to extend beyond their normal range of motion. This can result in instability, joint pain and dislocation in patients. 
  • Loose and fragile skin — Because the connective tissue in EDS patients is looser, a common effect of this condition is skin that stretches beyond its normal limits. People with this condition also typically have soft or velvety skin. Skin will also very often have problems healing properly, resulting in scarring, bruising and wounds. 

Other effects of EDS include joint pain, muscle weakness, deformity including scoliosis, bleeding, fatigue and chronic pain. One form of EDS, known as brittle cornea syndrome, can cause degeneration, protrusion and scarring of the cornea in the eyes. 

EDS is usually diagnosed in younger patients, but anyone experiencing any of the above symptoms should consult with a doctor for diagnosis. Although there is no cure for EDS, identifying the condition as early as possible can help patients make ongoing lifestyle adjustments to effectively manage the condition.  

Diagnosing Ehlers-Danlos syndrome

Children with EDS are often diagnosed due to visible signs of the condition and by missing key developmental milestones, including walking and developing certain fine motor skills. Doctors can typically identify EDS based on the presence of joint hyper mobility and loose skin as well as a family history of the disease. 

A blood test to detect certain genetic markers may be used to confirm or rule out rare forms of the disease, however, hypermobile EDS is usually not identified with genetic testing. 

Treatment for Ehlers-Danlos syndrome includes physical therapy

As there is no cure for EDS, treatment will center around managing symptoms through conservative therapies, activity modification and lifestyle changes. 

Physical therapy helps many EDS patients improve joint stability and strengthen muscles. Qualified physical therapists can also recommend braces for support and train patients in proper mechanics to reduce stress on the joints and prevent joint dislocation. 

Doctors may also recommend over-the-counter medication to manage joint pain and reduce inflammation, if necessary. Blood pressure medication can also help to reduce stress on the blood vessels for people with vascular EDS.

Patients should also practice a lifestyle that is conducive to their health and reduces stress on the joints. This includes avoiding high impact sports and activities, wearing supportive footwear, sleeping on an optimal mattress and eating a nutrient-rich, anti-inflammatory diet can all help patients successfully manage this condition on a long-term basis. 

Family and social support also play a key role in living with EDS, particularly among younger patients. Talking about the condition and how it will affect patients on a long-term basis and how to stay safe and healthy can be extremely beneficial for anyone diagnosed with EDS. 

Is surgery ever necessary for Ehlers-Danlos syndrome?

Surgery may become necessary for some patients who experience frequent joint dislocation. For those with vascular EDS, ruptured organs and blood vessels may require surgical repair. However, EDS patients have an elevated risk for certain complications, including surgical scarring and tearing around the stitches, due to the fragility of the skin. Because of this, surgery is usually seen as a last-resort treatment option. 

Reach out to USA Spine Care & Orthopedics to learn more about EDS care

The compassionate multidisciplinary treatment professionals at USA Spine Care & Orthopedics are dedicated to helping patients with a wide range of conditions receive the treatment they need to find relief and a healthy active lifestyle. From physical therapy to nutritional counseling, we can help patients develop a personalized care plan that fits with their needs and treatment goals. Our state-of-the-art facilities are designed to deliver a streamlined patient-centered experience that puts you at ease so you can focus on your wellness. 

To learn more about potential treatment options, contact us today

Ehlers-Danlos Syndrome (EDS) Quick Answers

Is EDS a serious condition?

Since Ehlers-Danlos syndrome refers to a group of distinct disorders, the severity of EDS can vary. People with EDS live with joint hypermobility, stretchy and delicate skin and frequent wounds and bruises that can negatively impact quality of life. In the most serious cases of vascular EDS, patients have an increased risk of fatal rupturing of blood vessels. 

What are the symptoms of EDS?

Symptoms vary depending on the type of EDS diagnosed. The most common form is known as hypermobile EDS which causes hypermobile joints and skin. Frequent bruising, bleeding and wounding is common and many people develop chronic pain. 

Does EDS get worse with age?

In a large number of cases, EDS does not affect life expectancy. One risk of hypermobile EDS is early onset arthritis. However, vascular EDS can lead to serious health events that lower health and life expectancy in older patients. 

How is Ehlers-Danlos syndrome diagnosed?Doctors will typically diagnose EDS based on skin fragility and elasticity, hypermobility in the joints and family history of the condition. If necessary, genetic testing can be administered to confirm the presence of certain genetic markers for more rare forms of EDS. 

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