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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Tags: Marfan Syndrome , Teens & Children
Vascular Ehlers-Danlos Syndrome (VEDS)
Ehlers-Danlos syndrome is a group of connective tissue disorders that are characterized by unstable, hypermobile joints, loose, “stretchy” skin, and tissue fragility. It is caused by a defect in the connective tissue. The fragile tissues and skin and unstable joints found in Ehlers-Danlos syndrome are due to a gene mutation in collagen. What other names […]
Tags: VEDS , Patients & Families
Parent Toolkit
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.
Tags: Loeys-Dietz Syndrome, Marfan Syndrome, VEDS , Caregivers
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.