Video Q&A about Marfan Syndrome: Challenges in Diagnosing and Treating

Thu, Oct 22, 2015
12:00pm to 1:00pm ET


Marfan and Thoracic Aortic Aneurysm Clinic directors Juan M. Bowen, M.D., internist and consultant in cardiovascular diseases, and Alberto Pochettino, M.D., cardiovascular surgeon, discuss Marfan syndrome symptoms, diagnosis, and treatment options, including optimal timing for thoracic aorta repair.  A live question and answer session followed the presentation.

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We’ll be starting shortly. Be sure to post your questions here in the Chat Box. Our experts will be addressing questions towards the end of the webinar.

I’m a 26 year old woman and I was recently diagnosed with marfan syndrome. Is it possible that I can have children? My husband and I would like to try.

I just learned my 3 1/2 year old grandson’s aorta is at 42 What does this mean and at what point do they do surgery?

My grandson had RSV 3 times as an infant and gets pneumonia regularly. My daughter-in-law said this is not marfan related. He has an inhaler now which helps and he has not ended up in the hospital with this issue since he started using it. Could his lung issues be marfan related?

What are the most important precautions and items that should be included for a young student with Marfans on a school health care plan?

How often do you recommend a 73 year old with an aneurysm in the ascending aorta be scanned, and what type of scan is preferable?

Does the diagnosis of tarlov cysts or sacral meningeal diverticulum positively correlate with diagnosis of Marfan Syndrome? If so, are you aware of studies producing data to suggest the positive correlation? I ask because I am a tarlov cyst disease patient with multiple surgeries to date. I am looking into connective tissue disorder diagnosis to understand other symptoms outside of tarlov cysts.

What medication do you recommend for a Marfan with a slightly enlarged aorta?

I am a professor in Biomedical Engineering with the expertise in biomechanics of extracellular matrix. How can I help clinicians improve the treatments of ocular and cardiovascular complications related to Marfan Syndrome?

what about genetic counseling for patients or siblings, when they plan to have children of their own?

Can you talk about normal growth/BMI assessment for Marfan pts? I am a dietitian who has seen some under wt Marfan pts.

If someone is diagnosed with Vascular Ehlers-Danlos Syndrome can or should the person have aorta repair?

How does pectus excavatum factor into the risk of aorta dissection? What are the risks/benefits of repairing the pectus excavatum?

When will the aortic enlargement show , at what age does it start to show?

What should I do if my insurance won’t cover genetic testing?

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