Marfan Syndrome

[Teresa UK]

Do many of you have Marfan Syndrome - or know someone who does? I am a secondary school Teaching Assistant and am preparing to teach a young lady with Marfans who starts at the school in September. I have found a few Marfan websites that give plenty of technical information (that will help all her teachers), but I'm really looking for more personal information that would (help me to) help her mother inform her daugher about the condition. The mother has kept all "difficult" info away from her daughter but is now contemplating opening up a bit to her, so that her daughter can start to take charge of her own condition, but mum doesn't know where to start or how much to tell. The daughter has an aortic problem, is prone to sudden death, but I don't know full details. ANY advice or comment would be much appreciated. Thanks.

 

[hensylee]

I am sure it has been talked about in VR. Members will search their memories and come up with some answers for you. Also, you can click on 'search', type in the subject and posts will appear for you to explore.

Also, there is a site where I have seen this subject discussed. It is about.com - heartdisease/cardiology. This is the site of Dr Richard N Fogoros. He is a real electrophysiologist cardio, answers questions himself, tho he doesn't give medical advice. He answers the same day unless it's a weekend or he is away on a trip. This subject is talked about a lot in that forum. I am sure you can search that site, too.

Best wishes.

 

[Marguerite53]

Hello. I did a Search on Marfan's here on the forum. Noticed this quote from Greggo and also some quotes from Rain. Please give the Search button here, a try. I suspect others will be along shortly to lead you to some answers, as well.

It is lovely that you are deeply wishing to help this family. Wishing you the best in your effort.

"..........from my understanding of genetics. There is a greater prevalence of connective tissue disease in tall people. Marfans Syndrome is something you should investigate. Please excuse me if I am insulting your intelligence. I'm not sure if you've heard of it. I am marfanoid. I am 6'4'', lanky, have a high arched pallet (mouth). However, a biopsy of my heart from my surgery in 1992 didn't show Marfans Syndrome. But I do have features of Marfans. It is important to keep in mind that this disease process is very different from the cardiac consequences of Rheumatic fever. Marfans folks tend to have aortic insufficiency and are susceptible to dissecting aortas. It sure would be fun to have a geneticist as a VR consultant."

Marguerite

 

[hensylee]

And we all know Greggo and Rain are TALL!