Musings of a Marfan Mom

Tonight: Marfan on Discovery Health

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Tonight, on Discovery Health, the show Dr. G: Medical Examiner will feature Marfan syndrome. Medical examiners work on the deceased, so as you might be able to tell, the storyline is going to involve someone who has already passed away.

The patient in question is a 22 year old woman who died suddenly while pregnant. The episode will show the medical examiner learning the cause of death was an aortic dissection from Marfan syndrome.

Obviously, this is a sensitive subject. I plan on DVRing the show, but I haven’t decided whether I’m going to watch.

There are a few things to keep in mind. One, there are many different ways to spread awareness of Marfan syndrome. We need to use all of them. Who knows what type of segment will reach out and touch a person, in what type of piece they will recognize their own story? Although the National Marfan Foundation doesn’t have final control over what information gets put into a show, they do work very hard to make sure key messages are presented so that viewers are getting accurate information.

Two, please keep in mind that this is the story of a woman who did not know she had Marfan syndrome. Her story is not the norm for pregnancy in Marfan. As with any aspect of Marfan, early detection and consistent monitoring is the key for living a long, happy life. There is research to show that healthy pregnancies and deliveries are possible for us and I’ve heard so many beautiful success stories both through my involvement with the NMF and this blog.

If you decide to watch the segment, I’d love to hear your thoughts. If I do watch, I may post here about it later.

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