Connective Issues Spring 2022

THE MOVEMENT SECURES FUNDING FOR EMERGENCY AWARENESS PROJECT

The VEDS Movement is excited to have secured a major donation from Dr. Ierachmiel Daskal and the Daskal Family Foundation to enhance awareness of VEDS in hospital emergency departments. The donation will fund a campaign to encourage medical professionals to complete a VEDS CME course as well as provide complimentary medical alert bracelets for people with VEDS. “Because people a ff ected by VEDS have such a subtle phenotype and the condition is so rare, most providers are not aware of the very high risk of aortic and arterial dissection and rupture and organ rupture,” stated Shaine Morris, MD, a member of The VEDS Movement’s Professional Advisory Board. “It is essential that providers recognize the critical nature of a VEDS diagnosis and the need for a high level of suspicion of anyone with VEDS coming to the emergency room for a potentially lethal event. Rapid assessment and cross-sectional imaging are often indicated.” Dr. Daskal, a retired pathologist, has a personal interest in VEDS, and his passion for in fl uencing the VEDS emergency room awareness project started when he was invited to a board meeting for a pharmaceutical company working in VEDS. “I heard three stories from people about their own personal tragedies in their encounters with emergency room sta ff that ended with catastrophic

Join The VEDS Movement in supporting REDS4VEDS, a global campaign which takes place on the third Friday of May each year. The aim of the campaign is to help raise the pro fi le of Vascular Ehlers-Danlos Syndrome (VEDS), a rare life limiting genetic disorder. It’s free and easy to get involved with REDS4VEDS: • Wear Red • Take a photo • Share on your socials #REDS4VEDS For more information on this campaign, visit Reds4VEDS.org. WEAR RED ON FRIDAY, MAY 20! sta ff in an emergency. If you are in need of a VEDS medical ID bracelet, please request on the website, TheVEDSMovement.org . If you’d like to support the education and awareness e ff orts of The VEDS Movement, please visit TheVEDSMovement.org/donate . outcomes,” Dr. Daskal said. “I was fi lled simultaneously with tremendous empathy and frustration about this happening over and over again to people with VEDS and decided I must do something about it.” Educating Emergency Medicine Clinicians The VEDS Movement and its Professional Advisory Board, along with The Sullivan Group, created a VEDS Continuing Medical Education (CME) course for medical professionals, speci fi cally targeting emergency physicians, nurses, and advanced practice clinicians. The course is available under the Resources tab on our website. Supplying Medical IDs to Save Lives The Daskal Family Foundation’s donation will also fund free medical IDs for people with VEDS through The VEDS Movement website. People with VEDS are at a high risk of life-threatening complications like arterial ruptures and dissections, organ ruptures, carotid-cavernous sinus fi stula, and lung collapse. A wearable medical ID is an important tool in helping communicate these risks to fi rst responders and medical

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Spring 2022