I am a SAHM to two boys (one who has autism and one who has Marfan syndrome), have my Masters in Public Health (my interest being in patient advocacy), and am an active volunteer with the National Marfan Foundation. I co-coordinate the NMF’s teen program and run a local group for other Marfan patients and their families. In my spare time I’m a medical drama TV junkie, enjoy gardening and cooking, and squeeze in time for reading and crafts when I can.
This blog is about my personal experience with Marfan, how having Marfan affects my roles of wife and mother, and my general thoughts on motherhood.
The NMF defines Marfan as “a genetic disorder that weakens multiple body systems, including the heart, blood vessels, bones and joints, lungs and eyes.” For a more detailed description, check out my Marfan 101 entry.
This blog is not intended to take the place of medical advice from your doctor. Always consult a physician with questions about your health. The National Marfan Foundation can provide you with information on Marfan-knowledgeable doctors.
This blog is also not affiliated with the National Marfan Foundation.
November 4, 2009 at 1:45 pm
It would be really neat if you could add a description about what exactly Marfan is. I google searched and found some great descriptions…I wonder if I’m the only one who had never heard of it before…
It sounds like you’re doing some really great things! I’m so inspired by people like you who work so hard to help the way you do. Amazing.
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November 4, 2009 at 2:19 pm
Thanks! I actually wrote a blog post describing Marfan, but I’ve realized it’s been lost in the shuffle. I’ll direct a link to that entry from this page.
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January 2, 2010 at 4:25 pm
I landed here looking for the Marfan info. It would be great if you redirect us to the offered page.
BTW, I’ve discovered your blog thanks to a comment you left at bloggeratto. com
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August 17, 2011 at 7:23 pm
Hello there – found you on the Blogelina “Guest Post” list. I’m currently taking her class and really like it. I have a child with a rare craniofacial condition (1 in every 160,000 births) so I love finding special needs blogs. It’s always interesting to read about someone else’s journey and to follow along.
I look forward to reading your blog! Hope you’ll stop by my site to learn about mine!
Taryn – http://www.moreskeesplease.com
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December 28, 2011 at 7:41 pm
Came here looking for info about marfan. Anyways, hope your 2 boys are ok.
Take care and thanks for the awesome blog.
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July 21, 2012 at 7:00 pm
So nice to find this blog. I was diagnosed with Marfan when I was 13 through a series of tests (though not a genetic test). For the most part I don’t have a lot of problems with it and never have (I’m 27) though I have fibromyalgia and a few other disorders that complicate my health a bit. My husband has never been tested, but he has so many classic Marf characteristics that we are curious if he has it. We’re looking to start a family soon but I’m a little worried about passing it on to our children. Nice to find your blog and follow your journey. Thanks for sharing your story!
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July 30, 2012 at 1:30 pm
I really like your blog and your attitude about your HDCT.
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September 16, 2012 at 1:52 am
I can’t wait to explore your blog. My oldest (13yr) has Marfan Syndrome and Autism. I can’t believe I didn’t stumble on your blog before! I’ve been marfmom on a popular baby/parenting site since 2003
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May 10, 2013 at 7:34 pm
Maya, I included you among my nominees for the “WordPress Family Award”. You mean so much to me and your blog is incredible, I couldn’t think of anyone I’d rather nominate!
http://connectivetissuedisorders.wordpress.com/2013/05/10/wordpress-family-award/
Thank you for everything you do!
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