The Ehlers-Danlos Syndromes

What are the Ehlers-Danlos syndromes (EDS)?

EDS includes a group of inherited disorders that affect the collagen in your connective tissues. Collagen provides the strength and structure that holds our bodies together.

When you have EDS, your collagen is not as strong and doesn’t provide the support needed to maintain healthy structures, primarily in your joints and skin. As a result, the two most common characteristics of EDS are:

Loose joints (joint hypermobility)

Your joints can move beyond their normal range of motion. For example, you may be able to bend your thumb back to touch your arm. Some patients may have unusual but harmless joint looseness, while others have more extreme hypermobility that may lead to complications.

Stretchy, fragile skin

Your skin might stretch more than normal and it may have a soft, velvety texture.  Skin in EDS patients is typically fragile and does not heal as well as skin from non-EDS patients.

What is hypermobility spectrum disorder (HSD)?

The new 2017 International criteria for a diagnosis of hypermobile EDS were designed to specifically define the most severely affected patients as having EDS and those that do not meet the formal specific criteria but still have significant issues related to loose collagen as having hypermobile spectrum disorder (HSD). Patients with HSD may have similar symptoms and complications as those with EDS.

What complications develop due to EDS and HSD?

Many patients with EDS/HSD develop chronic joint pain. You may also bruise easily and be susceptible to skin tearing and wounds that don’t heal well.

Hypermobility increases your risk of problems such as:

• Spontaneous joint dislocation or subluxation
• Soft tissue injuries
• Recurrent tendinitis and bursitis
• Premature osteoarthritis
• Scoliosis

What comorbidities are associated with EDS?

A broad range of comorbid health conditions is associated with EDS. These are only a few examples of more than 30 comorbidities found with EDS:

• Gastrointestinal problems
• Chronic fatigue
• Dysmenorrhea
• Migraines
• Temporomandibular joint disorder
• Lung deflation
• Spinal fluid leak
• Chiari-I malformation
• Cranio-cervical instability
• Scoliosis

How is EDS treated?

On average, symptoms begin to appear around the age of 12, but most patients aren’t diagnosed until they’re about 24. Getting an early diagnosis is a critical step so you can learn lifestyle changes and strategies to protect your joints and health.

Regular exercise is an essential part of treatment, but you should avoid high-impact sports like football. Many patients benefit from structured physical therapy with an EDS/HSD expert.

Beyond exercise, Dr. Schofield works closely with each patient to evaluate you for the important complications that may occur in EDS/HSD patients. While there’s no cure for EDS, she can help you improve your quality of life.

If you have loose joints and wonder about EDS, call the Center for Multisystem Disease or book an appointment online.