Vascular Ehlers-Danlos Syndrome (vEDS)

Vascular Ehlers-Danlos syndrome (vEDS) is a dominantly inherited, genetic connective tissue disorder. vEDS is particularly serious because of the risk for spontaneous arterial or organ rupture. Potentially fatal effects include arterial aneurysm, dissection, and rupture; bowel rupture; and rupture of the uterus when pregnant. Life span is often affected. This awareness video hopes to highlight some of the experiences of the community living with vEDS, the impact on their families, the importance of education and research, and hopes for the future. There is no better way of hearing what it is like to live with vEDS, than from individuals who have vEDS themselves. The Ehlers-Danlos Society is proud to be a member of The Vascular Ehlers-Danlos Syndrome Collaborative, a group of patients, family members, researchers, and clinicians, dedicated to developing a patient-centered plan for scientific research, to improve the management of vEDS, and to increase the quality of life for all those impacted by the condition. A vEDS diagnosis is most often sought because of family history; someone’s medical history; or pregnancy complications at a young age. Confirmation helps rule out other possible causes for symptoms as well as establishing a clear need for medical surveillance, treatment, and study of family members. After diagnosis, the first priority is assembling an integrated care team to provide a clinical and social support network for the individual and their family. Management is complex and requires multiple specialists who can respond to and manage major complications. In 2019, The Ehlers-Danlos Society launched vEDS ECHO: a program led by Dr. Sherene Shalhub dedicated to increasing awareness and education in all aspects of diagnosis and management of vEDS. VEDS ECHO is a revolutionary program that seeks to support health professionals around the world in caring for patients with vEDS. Clinical experts run a program that covers the main aspects of vEDS. Participants are able to share their cases and questions in the sessions and are guided to further educational materials and support. Continued Medical Education (CME) credits are available at no charge to participants. https://www.ehlers-danlos.com/project-veds-echo/ The Ehlers-Danlos Society offers monthly virtual support groups for those living with vEDS and their families, and also a group dedicated to parents; those who have vEDS and those who have children with vEDS. https://www.ehlers-danlos.com/virtual-support/ We are delighted to be hosting a dedicated event for vascular Ehlers-Danlos syndrome (vEDS) on July 31, 2021. Join us as leading experts present the latest research, management, and scientific information on vEDS and comorbidities. We will be offering live translations during this event in English (original language), French, German, Spanish, and Japanese. Register and learn more here: https://www.ehlers-danlos.com/eds-echo-event-series-vascular-ehlers-danlos-syndromes/ Much more awareness is needed of this type of Ehlers-Danlos syndrome, it is important that health professionals are educated in the presentation of vEDS, genetics and familial impact, possible implications and surgical interventions, and treatment guidance. The Ehlers-Danlos Society is committed to improving the lives of those impacted by vEDS, and facilitating global awareness and education. Our strength begins with hope. ehlers-danlos.com

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