Individuals with Ehlers-Danlos syndromes (EDS) often face multiple comorbidities, and recent research highlights the elevated prevalence of mental health challenges in this population
“Many patients with EDS present with depression, passive suicidal ideation, eating disorders, anxiety, panic disorders, autism spectrum disorder, and mood disturbances,” DO, MS, director of New York Institute of Technology’s EDS/Hypermobility Treatment Center and a professor of family medicine at the New York Tech College of Osteopathic Medicine.1
Research Findings on Mental Health in EDS
Multiple studies have explored mental health and neuropsychiatric impairment in EDS, with some focused on certain EDS subtypes or co-occurring disorders
In a 2022 review of 23 articles from a range of countries, Dr Riley and colleagues found that the neuropsychiatric disorders with the highest prevalence among EDS patients were language disorders (63.2%), attention-deficit/hyperactivity disorder (ADHD; 52.4%), anxiety disorders (51.2%), learning difficulties (42.4%), and depression (30.2%).1
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The way we talk about depression not only influences patients and caregivers, but also other clinicians and the learners joining us in our clinics.
—Ranita Harpreet Kaur Manocha, MD
Hypermobile EDS
In a 2025 cross-sectional study of 59 patients with hypermobility spectrum disorders and the hypermobile Ehlers-Danlos syndrome (HSD/hEDS), researchers in Calgary, Canada, found an overall mean Personal Health Questionnaire-9 (PHQ-9) score indicating moderate depression severity among participants, with 53% of patients meeting criteria for major depressive disorder as indicated by PHQ-9 scores of 10 or higher.2
The findings also showed associations between higher pain catastrophizing and fatigue scores and higher rates of depressive symptoms in these patients.2
EDS and Generalized Hypermobility Spectrum Disorder
Several recent studies examined mental health comorbidities among patients with EDS and generalized hypermobility spectrum disorder (G-HSD), including a 2025 retrospective study of 1035 patients with EDS and G-HSD at a clinic in Toronto, Canada.3
Based on self-report mental health screening tools, the results showed that 53% to 87% of participants reported current or past symptoms of anxiety or depression, and 19% reported disordered eating. Additionally, up to 34.8% reported posttraumatic stress disorder (PTSD), while up to 29.2% reported self-injury, and up to 18.6% reported suicidal behavior.3
The findings further demonstrated higher rates of anxiety and depression among EDS patients with G-HSD compared to those with non-hypermobile EDS, in both clinical interviews and mental health screenings including the PHQ-9 and DASS (Depression Anxiety Stress Scales).3
In a recent retrospective study published in the Journal of Psychosomatic Research, the same research group in Toronto found high rates of past suicide attempts (17.8%) and non-suicidal self-injury (30.2%) among 394 patients assessed for EDS/G-HSD. No difference in rates was observed between EDS patients with or without G-HSD.4
Further analysis showed that joint hypermobility and symptoms of borderline personality disorder were associated with higher odds of non-suicidal self injury, and that borderline personality disorder symptoms and autonomic dysfunction were associated with greater odds of a past suicide attempt.4
A cross-sectional study published in February 2026 investigated mental health comorbidities among 99 patients with EDS and G-HSD at a clinic in Cologne, Germany. Participants completed a self-report questionnaire as well as several validated mental health screening instruments.5
The results demonstrated that 85% of patients reported moderate to severe mental health impairment due to EDS/G-HSD and substantial prevalence rates of lifetime mental health diagnoses (58.6%). Anxiety disorders and PTSD were the most common self-reported disorders, and 27.3% of patients reported at least 2 mental health disorders.5
Scores on the PHQ-9 and the DASS indicated high rates of clinically significant depression (60.2%) and anxiety disorders (45.4%), respectively.5
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Along with the burdens of pain and other aspects of living with EDS, many of these patients have had negative experiences with health care providers. The mental and emotional toll can affect a patient’s daily life as well as their family, support system, and caregivers.
—Bernadette Riley, DO, MS
Factors Affecting Mental Health in EDS
While there is a dearth of long-term studies to identify mechanisms driving the high rates of mental health comorbidities in EDS, Ranita Harpreet Kaur Manocha, MD, MSc, clinical associate professor of physical medicine and rehabilitation at the Cumming School of Medicine at the University of Calgary, points to the elevated prevalence of chronic pain and chronic fatigue as a potential link. Dr Manocha is a co-author of the 2025 study of EDS patients in Calgary.2
“In other non-EDS populations, pain and fatigue are particularly associated with depression and anxiety, so that might be one reason,” she said. “The burden of living with a complex multisystemic condition may be an additional factor, and some qualitative studies have also shown how delays in diagnosis and feeling not believed by medical professionals might contribute.”6
Along with the burdens of pain and other aspects of living with EDS, many of these patients have had negative experiences with health care providers, Dr Riley explained. “The mental and emotional toll can affect a patient’s daily life as well as their family, support system, and caregivers.”
Dr Manocha added that impaired interoception — the ability to interpret bodily sensations — may represent another factor affecting mental health in patients with EDS, as suggested by emerging literature.7
Addressing Mental Health in EDS
The high reported prevalence of various mental health challenges in EDS underscores the importance of timely screening and intervention for these patients.
Dr Riley recommends screening EDS patients for depression with the PHQ-2 and PHQ-9, as well as taking a full social history that includes housing and substance use. She also noted the need to ask about eating disorders, sleep, physical activity, education history, and the patient’s support system.
Asking about and looking for scars that may be due to self-injury is important, as is “asking about psychiatric history, including hospitalizations, family history of behavioral health, substance abuse, and anything else the patient feels comfortable sharing,” Dr Riley advised. Physicians should also “ask about active suicidal ideation and plans and know when to utilize emergency services.”
In addition to screening for mood disorders, Dr Manocha recommends that clinicians screen for fatigue severity and the presence of pain catastrophizing and “educate patients on the symptoms of depression and the interactions between depression and pain, fatigue, and physical function.” This can help patients understand the need for depression screening and treatment as components of comprehensive care.
Dr Riley noted the need to build a referral network of mental health providers who see patients with EDS and to “actively utilize referrals to therapy and psychiatric services.”
Broader Steps to Address Mental Health in EDS
More broadly, Dr Riley cited the need for more research, clinician education, and treatment guidelines regarding mental health in EDS. “A team of clinicians who can discuss cases and forums for helping patients with EDS would be helpful.”
Dr Riley also suggested that clinicians aim to “reduce the stigma of mental illness and acknowledge that chronic conditions are challenging.”
Similarly, Dr Manocha emphasized the need to “normalize the presence of depression in many chronic illnesses and to destigmatize mental health conditions so that we do not unconsciously cause our patients to feel stigmatized.”
“The way we talk about depression not only influences patients and caregivers, but also other clinicians and the learners joining us in our clinics,” Dr Manocha said
- Kennedy M, Loomba K, Ghani H, Riley B.The psychological burden associated with Ehlers-Danlos syndromes: a systematic review.J Osteopath Med. 2022;122(8):381-392. doi:10.1515/jom-2021-0267
- Fletcher EKS, Fischer AL, Manocha RHK.Depressive symptoms are highly prevalent and associated with fatigue and pain catastrophizing in the Hypermobility Spectrum Disorders and hypermobile Ehlers Danlos syndrome: a cross-sectional study.Rheumatol Int. 2025;45(5):128. doi:10.1007/s00296-025-05869-5
- Slepian PM, Axenova K, McCarthy M, et al.Rates of mental <a href="https://healthylife7.com/these-reports-are-false-pentagon-responds-to-mental-health-concerns-on-uss-abraham-lincoln/" title="'These reports are FALSE': Pentagon responds to mental health concerns on USS Abraham Lincoln”>health concerns among individuals assessed at the GoodHope Ehlers-Danlos Syndrome Clinic.Orphanet J Rare Dis. 2025;20(1):75. doi:10.1186/s13023-025-03550-5
- Williams CM, Siegal R, Ratnasekera A, et al.Non-suicidal self-injury and suicide attempts among individuals seeking assessment for Ehlers-Danlos Syndromes.J Psychosom Res. 2026;207:112660. doi:10.1016/j.jpsychores.2026.112660
- Henning M, Hock M, Shukri A, et al.Prevalence and management of mental health comorbidities in a German cohort of patients with Ehlers-Danlos syndromes and a generalized hypermobility spectrum disorder.Orphanet J Rare Dis. 2026;21(1):83. doi:10.1186/s13023-026-04242-4
- Locke JD, Eastman JT.Navigating the psychosocial landscape of Ehlers-Danlos syndrome: an autobiographic case study.Discov Ment Health. 2025;5(1):123. doi:10.1007/s44192-025-00268-5
- Westerman M, Kafkas A, Parry-Jones A, Strong S, Retzler C, Hallam G.Neurobiological and neuropsychological disturbance in EDS.Front Neurol. 2025;16:1648702. doi:10.3389/fneur.2025.1648702
