Due to the predominant problem of aortic changes in this systemic disease, the Marfan outpatient clinic is assigned to pediatric cardiology.
The Marfan outpatient clinic also treats children and adolescents with related connective tissue diseases, provided they also have aorto-/arterio-, valvulo- or cardiomyopathy as a complication. This includes, for example, patients with Loeys Dietz syndrome, vascular Ehlers Danlos syndrome, Sphrinzen Goldberg syndrome, arterial tortuosity syndrome, cutis laxa type Ib, filaminopathies, etc. as well as non-syndromic aortopathies such as familial thoracic aortic disease - TAAD.
The task of the Marfan outpatient clinic and outpatient clinic for related hereditary aortopathies is, on the one hand, the regular care and consultation of affected patients in childhood and adolescence, for which there is also close cooperation with colleagues from cardiac surgery, human genetics, radiology, the eye clinic and orthopaedics at the AKH as well as with the Orthopaedic Hospital Speising.
In addition, the Marfan outpatient clinic also offers clarification of suspected hereditary - i.e. congenital - aortic disease. This clarification is carried out in close cooperation with the Human Genetics Institute of the Medical University of Vienna after detailed consultation on the necessity and possibilities of this examination.
Aortopathy can be suspected either in the case of an already known or suspected familial disease or in the case of clinically indicative signs of a connective tissue disease in the child or adolescent.
As Marfan syndrome has many overlaps with other congenital connective tissue diseases and the differentiation or diagnosis cannot be made solely by means of a genetic examination, it is advisable to carry out a detailed examination of all possible affected organs BEFORE the initial presentation at the Marfan Outpatient Clinic. For this purpose, we ask you to complete the linked examination and questionnaires in advance or have them completed by your doctors and then send them back to the email address provided.
In addition to medical care, psychological support is also offered if required, and it is also recommended that you join the "Marfan Initiative Austria" self-help group:
www.marfan-initiative.at, info@marfan-initiative.at.