Musings of a Marfan Mom

About This Blog

I am a stay-at-home mom 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 Marfan Foundation. I co-coordinate the Foundation’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 reading and cooking, and squeeze in time for 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 Marfan Foundation 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 post.

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 Marfan Foundation can provide you with information on Marfan-knowledgeable doctors.

This blog is also not affiliated with The Marfan Foundation.

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17 Comments

  1. 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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  2. 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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  3. 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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  4. 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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  5. 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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  6. 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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  7. I really like your blog and your attitude about your HDCT.

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  8. 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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  9. Pingback: The Liebster Award « Connective Tissue Disorders: My Journey

  10. 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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  11. Hi, I saw your blog and am married to a man with Marfan Syndrome as well as have a two year old that has it. I have a son that I question whether he has it or not because he is a chubby very long baby. (I have had doctors state that he can’t be chubby and have Marfan’s). Have you had this issue ever? Also, thank you for giving us moms some support.

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    marfmom Reply:

    Hi Alisha, nice to meet you! A person CAN be chubby (or even obese) and have Marfan. While the “classic” Marfan picture is of an exceptionally tall and thin person, people with Marfan come in all shapes and sizes. If genetic testing is something your husband has had done, then this child could have that done too. Otherwise, the latest recommendation is to get echoes at regular intervals, since a clear echo at a young age does not clear a person from having Marfan. Also, there is not a too young to start doing evals! My son had his first eye exam at 4 weeks and first echo at 6 weeks. If you’re not already connected with the Marfan Foundation, they can send you some info to share with your child’s doctor. Let me know if you want their contact info! :-)

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  12. Thanks for responding. I thought that was the case. Do you have experience with the eye surgery? Our two year old has had one set of surgeries and we are waiting to decide on implanting the synthetic lenses. Thanks again!

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    marfmom Reply:

    I’ll email you!

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  13. I have truly never heard of Marfan until visiting your blog. God bless you for bringing awareness! I am visiting from SITS. I hope you are having a great week!

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  14. Great blog. Waiting to find out if my baby has marfans. Nice to read about your experiences as a marfmom in case I do become a mother to one.

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    marfmom Reply:

    There’s a great community of moms online and I’m happy to help get you connected if your baby is affected with Marfan or a related disorder! Just email me. :-)

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