Managing the Challenges of Ehlers Danlos Syndrome

Ehlers-Danlos Syndrome (EDS)

While Ehlers-Danlos Syndrome is classified as a rare disease, it affects 100,000s people worldwide.

Why You Get It

Ehlers-Danlos Syndrome, also referred to as EDS, weakens the connective tissue in the body. Ehlers-Danlos Syndrome is inherited. EDS affects the body very differently from person to person. Each person’s experience is their own and is likely to not be the same as someone else’s. Loose joints, hypermobility, abnormally smooth skin, and easy bruising characterize the common symptoms.

Many people with EDS are affected by other syndromes which are tightly intertwined. The diagram illustrates some EDS-related disorders. Ehlers-Danlos Syndrome is complex. Having bendy joints is just one aspect of what EDS encompasses. It affects the intestines, blood-brain barrier, ligaments that hold organs in place… the list can be very long.

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There are 13 subtypes of Ehlers Danlos Syndrome. The most common subtypes are Hypermobile EDS (hEDS) and Classic EDS (cEDS).

Hypermobile EDS

Hypermobile EDS (hEDS) the most common subtype of Ehlers-Danlos Syndrome. It is characterized by:

Generalized joint hypermobility (affecting both large and small joints), therefore joints can end up subluxating or dislocating readily
Mild involvement of the skin (thin and uncharacteristically smooth)
Acute or chronic pain
Chronic fatigue
Anxiety
Sleep disturbances

Diagnosing hEDS is not easy and many doctors are unaware of how to treat patients with EDS. Hypermobile EDS is the only form of Ehlers-Danlos which can not be confirmed with genetic testing. There is no test available and there are many factors that may be similar to other disorders making it hard to diagnose. A clinical diagnosis of hEDS has a set of 3 detailed criteria that must be met.

Classic EDS

The major criteria for Classic EDS (cEDS) are:

Skin hyper-extensibility
Atrophic scarring
Generalized joint hyper-mobility

There are 9 minor criteria that must also accompany the major ones for a diagnosis of cEDS, so Classic and Hypermobile subtypes share a number of common characteristics. The final diagnosis requires confirmation by molecular testing which will show a heterozygous mutation in one of the genes encoding type V collagen. cEDS is inherited in the autosomal dominant pattern.

Treatment

Muscle & Joint Clinic is a world leader in treating Ehlers-Danlos Syndrome. With our years of experience treating EDS, our background is unparalleled. We don’t predetermine what your care is going to be. Treatment is tailored to each person’s needs following an exam. Most often, treatment is a combination of in-office and home-based therapy. Muscle & Joint Clinic will closely monitor your progress, modifying it as your body restores its strength and capacity.

While Ehlers-Danlos Syndrome is not curable, Muscle & Joint Clinic’s proven track record has allowed many of our patients to reduce pain and increase function. We have helped patients devastated by pain, joint instability, and other aspects of EDS. We work with you to find the best way to develop a pain-reduced or pain-free lifestyle. Many people who live with EDS have learned with proper treatment they can still be active and do the things they love.