Ehlers-Danlos syndrome

What is Ehlers-Danlos syndrome

What is Ehlers-Danlos syndrome

Ehlers-Danlos syndrome (EDS) is considered a rare condition, although its prevalence is difficult to determine precisely due to variations in diagnostic criteria and awareness among healthcare professionals. It’s estimated to affect about 1 in 5,000 to 20,000 individuals worldwide. However, some experts believe that EDS may be underdiagnosed due to its wide range of symptoms and variability in presentation.

As stated in by the Ehlers-Danlos Society, Ehlers-Danlos syndromes (EDS) is defined as a group of 13 heritable connective tissue disorders. The conditions are caused by genetic changes that affect connective tissue. Each type of EDS has its own set of features with distinct diagnostic criteria. Some features are seen across all types of EDS, including joint hypermobility, skin hyperextensibility, and tissue fragility.

There are several types of Ehlers-Danlos Syndrome, each with its own set of symptoms and characteristics. The most common types include:

  • Classical EDS (cEDS): Characterized by hyperextensible skin, atrophic scars, and joint hypermobility.
  • Hypermobility EDS (hEDS): Main features include joint hypermobility, chronic joint pain, and joint instability.
  • Vascular EDS (vEDS): The most serious form, marked by fragile blood vessels and organs, leading to potentially life-threatening complications such as arterial or organ rupture.
  • Kyphoscoliotic EDS (kEDS): Known for severe muscle weakness, kyphoscoliosis (an abnormal curvature of the spine), and joint hypermobility.
  • Arthrochalasia EDS (aEDS): Characterized by severe joint hypermobility and congenital hip dislocation.
  • Dermatosparaxis EDS (dEDS): Identified by extremely fragile, sagging skin with a high risk of rupture.
  • Brittle Cornea Syndrome (BCS): A subtype of EDS characterized by thinning and fragility of the cornea.

ASAP and
Ehlers-Danlos syndrome

This year, at our 2024 Conference we will have experts talking about Ehlers-Danlos syndrome.

Visit our Conference page to learn more about our speakers. You will have an opportunity to ask questions and be heard at the conference.

Past conferences we have featured Ehlers-Danlos syndrome (EDS) with these speakers below.

2022 Conference Dr. Ruhoy “Pain and EDS

2022 Conference Dr. Maitland “Neuropsychiatric Manifestations of Mast Cell

Robert Keating, MD Connective Tissue Hypermobility: EDS & Chiari 1 Malformation in the Pediatric Patient

2021 Conference: The Pentad Patient: Ilene S Ruhoy, M.D., PhD