Téléchargez cette carte et conservez-la en cas d’urgence. Présentez cette carte aux urgences et demandez au médecin de suivre les instructions avant de vous libérer de ses soins.
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Patient Care Coordination Instructions
In order to have better outcomes in the emergency department for people with genetic aortic and vascular conditions, a Patient Care Coordination Note (PCCN), can provide triage nurses and ER physicians, with life-saving information for these rare conditions. This patient care coordination note appears in the upper left hand corner in red, when you open […]
Tags: All, VEDS , Healthcare Professionals, Patients & Families
Die Lunge Beim Marfan-Syndrom
Viele Patienten mit Marfan-Syndrom und einigen verwandten Erkrankungen haben Probleme mit ihrer Lunge. Wenn Sie das Marfan-Syndrom haben, ist es wichtig, dass Sie einen Pneumologen (einen Spezialisten für Lungenkrankheiten) aufsuchen, wenn Sie den Verdacht haben, dass Sie Probleme mit Ihrer Lunge haben.
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Cardiac Surgery
People with Marfan syndrome frequently have problems with their heart and blood vessels. Sometimes, these problems are very serious. The most common complication affects the aorta (the main blood vessel carrying blood from the heart to the rest of the body). Heart valves may be affected as well. Less often, blood vessels other than the […]
Tags: Marfan Syndrome , Patients & Families
Know the signs.
Fight for victory.
Join us in the fight for victory over Marfan syndrome and related conditions and help us create a brighter future for everyone living with these conditions.