Non-suicidal self-injury and suicide attempts among individuals seeking assessment for Ehlers-Danlos Syndromes

Individuals with Ehlers-Danlos Syndromes (EDS) and Generalized Hypermobility Spectrum Disorder (G-HSD) experience psychological distress and are at an increased risk for suicidal behaviors. The current study examined associations between factors uniquely relevant to this population and prior suicide attempts and non-suicidal self-injury (NSSI).

Data were from a retrospective chart review of 394 consecutive patients (89% female) referred for an EDS/G-HSD assessment at the GoodHope EDS Clinic at Toronto General Hospital between November 2019 and June 2021. Patients completed suicide and self-injury screening questions prior to assessment, and analyses include those who did and did not receive a diagnosis.

One in six reported a past suicide attempt (17.8%) and almost a third reported past NSSI (30.2%). Rates of NSSI and past suicide attempt did not differ based on EDS/G-HSD diagnosis. Separate adjusted logistic regression analyses revealed that joint hypermobility (aOR = 1.13, p = .037) and symptoms of borderline personality disorder (BPD) were associated with increased odds of reporting NSSI (aOR = 2.87, p < .001) and that BPD symptoms (aOR = 2.32, p < .001) and autonomic dysfunction (aOR = 1.06, p = .005) were associated with increased odds of reporting a past suicide attempt.

Joint hypermobility, BPD symptoms, and autonomic dysfunction may be important factors when examining rates of NSSI and suicide attempts among individuals being assessed for EDS/G-HSD. Given the high prevalence of NSSI and suicide attempts observed, future research should continue to investigate mechanisms and examine the effectiveness of psychological interventions for this population.