This book was created to help readers understand the basics of Marfan syndrome diagnosis and treatment, as well to provide guidance on the lifestyle and practical issues commonly encountered by people with Marfan syndrome or a related disorder. Perhaps you have recently been diagnosed with Marfan syndrome—what should you expect? Or your child’s pediatrician has suggested he or she be evaluated for Marfan syndrome—what does that entail? Or maybe your new spouse has Marfan syndrome and you want to have children—what are the risks and can you do anything to minimize them? This book aims to address these and many other questions.
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Die Haut Beim Marfan-Syndrom
Dehnungsstreifen auf der Haut (Striae atrophicae) können bei jedem auftreten, insbesondere als Folge von schnellem Wachstum in der Pubertät, von Schwangerschaft oder starker Gewichtszunahme oder -abnahme. Patienten mit Marfan-Syndrom neigen dazu, Dehnungsstreifen zu entwickeln, und das oft schon in jungen Jahren und ohne Gewichtsveränderungen. Diese Streifen tauchen in der Regel in Bereichen des Körpers auf, […]
Tags: Marfan Syndrome , Patients & Families
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
Family Planning and Pregnancy
Decisions about family planning can be difficult and very emotional when one of the prospective parents has a genetic disorder, such as Marfan syndrome. Before making any decisions, parents should understand the many options now available, as well as the potential risks to the child and the mother. A genetic counselor or the nurse in […]
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.