It’s estimated that between 3,000 and 8,000 people in the U.S. have Vascular Ehlers-Danlos Syndrome (VEDS), although many are undiagnosed. Because 50% of those with the condition do not have a family history, the road to diagnosis and expert care can be long. Many individuals with VEDS are not diagnosed until they have a life-threatening event, and 80% of VEDS patients will experience a major medical event by age 40; too many are diagnosed during autopsy.
The likelihood of someone coming into the emergency department unaware of their VEDS diagnosis is high, but a VEDS diagnosis can change the approach to a patient’s emergency and surgical care and outcomes. Therefore, it is critical to be familiar with this condition. Here we present a missed diagnosis case and its impact on the invasive interventions.