For families navigating life with a genetic aortic and vascular condition, the move from pediatric to adult care can feel like a mixed milestone. The transition often marks the first time a young person is expected to take primary responsibility for their health by managing appointments, medications, and decisions that were once made by parents/caregivers […]
Resource For: Caregivers
Stimulant Use in Children with Genetic Aortic and Vascular Conditions
A concise, evidence-based clinical guidance document from the Marfan Foundation in collaboration with Luciana Young, MD, offering families, pediatricians, and cardiologists practical information on evaluating and treating ADHD in children with genetic aortic and vascular conditions such as Marfan syndrome, Loeys-Dietz syndrome, and Vascular Ehlers-Danlos syndrome. This article is intended for educational purposes only and […]
How to Ask for Help Guides
When you’re recovering from surgery or having a pain flare-up, people often ask how they can help. But when you’re not feeling well, it’s hard to know what to say. These worksheets are designed for adults, teens, and kids to communicate the best ways to support them through medical events.
Decoding Genetic Insights: Navigating Possible Test Results
Understanding your genetic test results for conditions like Marfan, Loeys-Dietz, or VEDS can be challenging. Here’s a simple Q&A to help make sense of what your results may mean and what you might consider doing next.
Mental Health Resources
While most people with chronic conditions focus on their physical health, mental health is often ignored. Having a connective tissue condition isn’t easy, so give your mind the TLC it needs.
Know the Signs of an Aortic Aneurysm and Dissection
People with Marfan syndrome are at up to 250 times greater risk of aortic dissection (a tear or rupture between layers of the aortic wall) than the general population. That’s why it’s important to know the signs of an aortic dissection and what to do. Symptoms of aortic aneurysm may be related to the location, […]
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.
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