Musings of a Marfan Mom

3rd Annual Marfan Symposium

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The symposium this weekend was terrific! I love any excuse to get together with my Marfamily, you all know that, but the information was also fantastic and I learned a lot of new things.

Dr. Liang, head of Stanford’s Clinic for Marfan Syndrome and Aortic Disorders, gave the first lecture. He oversees the Stanford Losartan vs. Atenolol trial site. The first major run of data has already been done and the study hasn’t been stopped, which means there isn’t a clear “winner” yet in terms of which drug slows down aortic growth the best, but there’s still quite a ways to go yet! Enrollment has been extended until January and they’re 50ish people short of the 604 participants that they need.

Next was Dr. Fishbein, a new cardiothoracic surgeon at Stanford who is working under Dr. Craig Miller. He discussed a few of the options for aortic surgery and showed pictures from all of them. Luckily, it wasn’t right after we’d all eaten! I loved seeing just how aortic valve sparing surgery is done though!

Our chapter president used to work at this AWESOME place called the Office of the Patient Advocate. Her boss came in to speak about what they do. If you live in the state of California and are curious about the quality of your insurance company, or are having problems with your insurance company, GO TO THEM‼! One of the awesome things that they do? In CA, if your insurance company won’t cover something they think you should (say, you want to go out of network to Stanford so you can get valve sparing surgery instead of a mechanical valve), you can file a complaint with the OPA. An independent panel of doctors will make the final call about coverage and the insurance company has to do what they say! How awesome is that? Not every state has one of these, CA was the first, so you may have to do some digging to see what’s available where you are.

My favorite lecture was Dr. Carroll’s, on pain management. Why isn’t he MY pain management doctor?! Uh, because it’s brilliant doctors like him that spend most of their time doing research. :-( Anyway, he actually made his presentation available online, but I’m having trouble getting the link to work. Once I get a working link, I’ll post it here. He is also interested in doing some research on Marfan pain (and not many doctors are!), so he’s looking for local Marfs who are interested in being involved in a study.

Dr. Dwyer, from California Pacific Medical Center, spoke on pregnancy in Marfan syndrome. It was a great lecture. It covered all the different risks, but also gave the message that pregnancy is totally manageable for women with Marfan syndrome.

I was the last speaker. I gave a short talk about my journey thus far as a Marfan Mom. I’d put it up here, but it’s nothing I haven’t already said before.

We finished out the day with a presentation from ULaugh, a company that does laughter classes for companies and hospitals. It was ok. Those aren’t really my thing, but I think most people loved it.

I can’t wait for next year’s! These are NO substitution for conference, but if you have specialist sin your area, a one day meeting like this can provide a lot of good information, especially for those who can’t attend an NMF conference.

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3 Comments

  1. glad you had a good time! Sounds like great info!

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  2. I am happy to know meetings such as this one are taking place!! i´m afraid i´m far away from the US, as i´m from Argentina, but i´m glad to see that lots of investigations about the syndrome are being held and that it doctors are getting more and more interested in it! I hope i can go to a symposium some day.. imagine i haven´t even met a Marf face to face! it´s quite comforting to find blogs like this one, i feel i´m not alone in dealing with Marfan.
    Thanks!!!!

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  3. Thanks Maya for writing a wonderful recap of the day’s event at the Third Annual Marfan Symposium in Rocklin, CA on May lst! We are looking forward to planning the Fourth Annual for 2011! Stay tuned for more details!

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