Musings of a Marfan Mom

Kaitlyn’s Story


Kaitlyn is one of the fabulous teens I have the privilege of working with. She currently serves on the Teen Council, a subcommittee of the National Marfan Foundation’s Board of Directors.

My name is Kaitlyn, I am 16 years old, and I have Marfan syndrome. I have to admit, when Maya asked me to do a guest post, I was incredibly excited. The chance to share my story is always a privilege.

When I was around the age of 4 or 5, I was diagnosed with Marfan syndrome. My mother had also been diagnosed, but due to having less medical care and education that she needed, she passed away in 2006 of an aortic dissection. There were several generations of family history with Marfan involved in my diagnosis. I always thought that there weren’t that many people with Marfan syndrome, so I had never met anyone else with the disorder, apart from family members. I certainly had never met someone close to my own age with Marfan syndrome.

I had never been extremely educated in what Marfan syndrome was. My parents had always taken me to the right doctors, and it had just been something that had always just been there. A little over a year ago, I was curious to learn more about what exactly Marfan syndrome was. So I got on my computer, and began searching for answers.

I found the NMF website pretty quickly. It had so much information. I learned certain minor characteristics of Marfan that I didn’t even know could be explained by Marfan syndrome. I saw all the social and medical advice on the Teenspace. Finally I found my way to the NMF’s social networking site, NMF Connect. I began talking to and meeting people through this site. I met several other teenagers with Marfan Syndrome, or related to people with Marfan syndrome. I made many new, fantastic friendships.

Soon, after talking to different people, I found out about the NMF annual conference. I found out that it was going to be in Houston, Texas. Houston is not too far from where I live My family couldn’t afford the expenses of the conference, so we applied for a scholarship. The NMF graciously accepted my dad & I, and we attended the 2010 NMF Annual Conference.

Through the conference, both my dad & I received so much education. We forged new friendships, and deepened ones already created through NMF Connect. It was one of the greatest experiences of my life, and I am sure my dad would say the same. We are extremely grateful to the NMF for everything they do for the Marfan community.

What I have to leave you with, is a reminder. A reminder that if you see signs of Marfan syndrome, talk to your doctor. Seek the proper medical assessments. If you do have Marfan syndrome, it is important that you be diagnosed as early as is possible, so that you can receive the proper monitoring and treatments.

Please, support the NMF by casting a vote for them in the Chase Community Giving Campaign. Any money won will go to support programs that promote early diagnosis.

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