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How Marfan Syndrome Has Led Me To Study Sociology...

Hello!

My name is Sarah and I am a 24-year-old woman who was diagnosed with Marfan syndrome when I was very young. I am also a first year Master of Sociology student focusing on Health and Illness at Wilfrid Laurier University. As I will explain, these are no coincidence. As a young girl growing up with Marfans, I did not realize the extent of my disorder (apart from the many doctor visits) until I had my first heart surgery when I was 10 years old. This was followed by a second heart surgery at the age of 12 and a spinal fusion when I was 17 years old. I was lucky enough to have a mother who took on the responsibility of managing my care, which allowed me to be a happy go lucky child. As I have grown older I have gone through the process of transitioning to self-care, and as a teenager and young adult this was accompanied with attempting to understand how living with Marfans fits into my identity.

My journey growing up with Marfan syndrome has very much contributed to my studies and has guided me towards the research I am working on today. Throughout my four years of an undergraduate in Honours Sociology, I was fascinated by courses in Sociology of Health and Illness, Sociology of Medicine, Biomedical Ethics and Disability Studies. I found that I could analyze and express my experience with Marfan syndrome through Sociology and by doing so, come to understand what Marfan syndrome meant for my self and my life. I also found that I was not alone in wanting to write about my experience. My work fits into the broader literature on chronic illness, identity, uncertainty and risk found within the Sociology of Health and Illness. I am able to connect theories about uncertainty in chronic illness with my experience of worrying that my Marfan body is a ticking time bomb waiting for something to go wrong. I am also hopeful to create a space where the experience of living with Marfan syndrome can be expressed and understood within social research on Marfan syndrome. My studies are not only educational, but a process of self-discovery. It is what has allowed me to begin to unravel the complexity of a life with Marfan syndrome and what this means for myself and others.

This is my story.
SarahMc67 SarahMc67 22-25, F 1 Response May 24, 2012

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Hey, I'm Kat and I also have Marfan Syndrome. I know this post is a few years old but maybe you'll still see a notification.

I'm actually from Waterloo, currently living in Germany right now and I think we're around the same age if you were 24 in 2012.

I wanted to say that I appreciate your post. Reading many of these stories on this website has made me realize how mild my symptoms are and this makes me appreciate my good health a lot more.

Growing up was difficult for me due to the disorder's effects on my physical appearance but I haven't realized until these past few years and from reading posts like these that I have been very lucky. I have only had one lens removal surgery when I was 11 and currently, though I do have a mitro-valve prolapse, my aortic measurements have been comparable to a normal and healthy adult heart.


However, now my husband and I are having our first child (a boy!:)) and I'm very concerned on how marfans will affect him, if it will affect him at all, and the likelihood of him having a more severe experience than I have. I understand that the chances are 50% in passing it on to our children but I'm more concerned on the severity of the disorder.

I had always told myself before I got married that I would choose IVF over conceiving naturally. But with my husband being a romantic, and wanting more than ever to be a mom in the here and now, the exception was made.

How have you dealt with the disorder these past few years? Do you also worry about pregnancy and the effects of Marfans on your children/future children?

Growing up I had only briefly met someone with Marfans at a medical conference for the disorder, so I felt pretty alone and isolated in my experience. It would be so nice to talk with someone (especially from waterloo!) about their experience and continuing experience.

If you do actually end up reading my message, please add me on facebook or email me, katrinagalarraga@ gmail.com I am so interested to hear more about your experience and share stories, concerns or whatever.

Take care,

Kat