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.