UNDERSTANDING HYPERMOBILE EHLERS-DANLOS SYNDROME

Ehlers-Danlos Syndrome (EDS) is a connective tissue disease that is inherited; passed from parent to child. Those with EDS have a problem producing collagen, which causes their connective tissues to be weaker than they should be.

According to Professor Rodney Grahame, it is estimated that 95% of US cases are missed or misdiagnosed. It is believed to affect approximately 1.5-million people globally. The condition is traditionally diagnosed by a neurologist or rheumatologist and is confirmed by the use of genetic screening.

SIGNS AND SYMPTOMS OF HYPERMOBILE EHLERS-DANLOS SYNDROME

Children with Hypermobile Ehlers-Danlose Syndrome (hEDS) experience loose, unstable joints that can easily dislocate. This often makes walking difficult and children prone to falling. They also typically have skin that is easily bruised and suffer from extreme tiredness.

Like many other childhood disorders, hEDS can present in a variety of ways, with different levels of severity. The way it presents can change over time as well. Here are some of the symptoms patients may have:

• Hyperextensibility in the skin (skin that can stretch more than normal)

• Fragile tissue or skin that bruises easily

• Joints that stretch or overextend more than normal (Joint Hypermobility)

• Dysautonomia

• Chronic migraine headaches

• Fibromyalgia

• Temporomandibular joint pain and dysfunction

• Numbness, tingling, or burning in hands, feet, and nerves

• A high sense of anxiety

• Dark red or bluish color to the legs when standing up

According to an article in Scientific America, a study published in 2014 in the journal Frontiers in Psychology is among the most recent to confirm the association, finding that people with hypermobile joints have heightened brain activity in anxiety regions.

PARENT RESOURCES FOR EHLERS-DANLOS SYNDROME

As with any medical issue, education is the first step towards finding appropriate treatment and learning to best support your child. Here are a few resources we recommend:

• Bendy Bodies Podcast

• Disjointed: Navigating the Diagnosis and Management of hEDS book

• Ehlers-Danlos Hub at edshub.org

As with any medical condition, contact your pediatric medical professional for diagnosis and treatment for your child's condition.