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: http://www.nhvtmarfan.org/. 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.