Musings of a Marfan Mom

Marfan Monday


It’s another hodgepodge of a Marfan Monday!

First up, if you missed my Wordless Wednesday, I’m pregnant! I’m due at the beginning of December. Yes, you can expect a lot of pregnancy related posts now. I was so busy with grad school when I was pregnant with Menininho that I didn’t document it well, so I’ll do a better job this time around. I’m about 7 weeks pregnant, completely exhausted, and nauseous all day long. It feels a lot worse than last time, but at least I know it doesn’t last forever, and in the scheme of things it won’t be too long before the fun part of pregnancy starts.

It’s spring, which means it’s symposium time!!! These are one-day long, chapter-sponsored educational events designed to be like mini-conferences. The Northern California Chapter will be hosting our 3rd annual Marfan Symposium in Rocklin on May 1st. There is a program for teens and children (pizza and bowling). Breakfast and lunch are served. Lecture topics (taught by top Stanford docs) include diagnostic criteria, pain management, healthcare access, and pregnancy. Yours truly will be one of the speakers (can you guess which topic I’m discussing? Rather timely!) If you haven’t already registered but you’re interested in attending, let me know ASAP so we can get you counted before I have to turn in the final meal counts. It’s $10 a person or $20 for a family.

This year there will also be a symposium in New Hampshire. More information can be found at their network group’s website: Cost to patients is $10 per family prior to April 30th.

Finally, there is another research project going on, this time through Johns Hopkins. I have no tie to this study except as a participant, but I want to get the word out. This study is looking at the eyes in patients with Marfan syndrome, and researchers need information from patients with eye problems and without. It’s non-invasive (survey). You can get more information here.

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  1. congratulations on the pregnancy!!!

    dropping by from SITS


  2. My daughter and hubby are part of the new eye study too! I sign them up for EVERY study they qualify for – the more research that is done now, the better we all are later on! :)

    I am so excited about your #2.


    marfmom Reply:

    Thanks! We’re so excited too!

    And yah, I am the same way: I will do any study that I’m eligible for, and if this baby has Marfan, we’ll do the same. Otherwise, I feel like we can’t complain when no advancements in treatment are made! I REALLY hope they get enough participants in the Losartan vs Atenolol trial to be able to get valid results.


  3. Hi Maya, Thanks for the info. I wish I could participate in the Losartan/Atenolol trial, since I take Losartan, but I am too old. When you get a chance could you please email me your notes on dural estastia(sp?). Do you have it? Thanks!


  4. Saw you on SITS! COngrats on the new little one! So exciting!


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