This Parent Toolkit is a resource for parents of children with Marfan, Loeys-Dietz, VEDS, or another genetic aortic condition. It offers resources to help you deal with your child’s school, doctors, and healthcare, and guide you to additional resources for information and support.
Related Resources
Medizinische Familienvorgeschichte
Ihre Familienanamnese ist eine Sammlung von Gesundheitsinformationen über Sie und Ihre nahen Verwandten. Es enthält Informationen über Störungen, Krankheiten und Gesundheitsprobleme, die für Sie und Ihre Kinder jetzt oder in Zukunft gefährdet sein könnten. Am wichtigsten ist, dass es auch Ihren Ärzten helfen kann, wenn sie überlegen, ob Sie ein Marfan-Syndrom oder eine verwandte Erkrankung haben oder nicht.
Loeys-Dietz Syndrome
Loeys-Dietz syndrome is a genetic disorder of connective tissue. Because connective tissue is found throughout the body, Loeys-Dietz syndrome features can occur in the heart, blood vessels, bones, joints, skin, and internal organs, such as the intestines, spleen, and uterus. Some Loeys-Dietz syndrome features are easy to see. Others features, such as heart and blood […]
Nervous System in Marfan Syndrome
The nervous system—the brain and spinal column—are surrounded by fluid contained in a membrane called the dura, which is primarily made up of connective tissue. The enlargement of this membrane (and sometimes the presence of cysts) is referred to as dural ectasia. Dural ectasia is present in more than 60 percent of people who have […]
Tags: Marfan Syndrome , Patients & Families
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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.