The end of this year will mark 10 years since my world changed, 10 years since my parents scoured the internet trying to find anything about this new syndrome, 10 years since I was diagnosed with Loeys-Dietz syndrome. My parents found some of the information they were looking for on The Marfan Foundation’s website. Then, the following summer, they took my brother and me to a conference the Foundation was having in Philadelphia.
Ten years ago, we lost a dear member of our community, Julie Kurnitz. Julie served on our Board of Directors, appeared in our videos, was a founder of the Marfan Artists Project (which is now our Heartworks gala), led conference workshops, spoke to doctors and nurses about Marfan syndrome, and, was featured in print and broadcast media to raise awareness of Marfan syndrome. More than that, she was an inspiration to so many in our community as she gave so much of herself, with a smile on her face, even as she faced multiple medical challenges of Marfan syndrome.
“I wouldn’t worry too much about the rapid heart beat, but you should look at this.” Those words began our adventures with Marfan syndrome. Our son Micah was five when an insightful pediatric cardiologist at the Alaska Native Medical Center in Anchorage identified an already enlarged aorta and suggested he might have Marfan. We had taken him to see the doctor because his heart would sometimes race for no apparent reason. One fortunate trip to this doctor and soon we were neck-deep in research, more medical appointments, and, luckily, our association with The Marfan Foundation.
I first got involved with The Marfan Foundation the summer before my freshman year of high school. I had been bullied all through middle school and was apprehensive at the idea of 'movin' on up', only to end up being at the bottom of the school hierarchy pyramid all over again.
Topics: Marfan Conference
I don’t have the greatest memory, so I am not sure when I attended my first conference. I do remember that it was in St. Louis, and I must have enjoyed it because I kept going back. Then, for a number of years, I didn’t go, mostly because of the surgeries I had to have. Indeed, my slight memory issues are probably due as much from the effects of sedation from those surgeries and the necessities of daily pain medication as they are from age (I’ll be 46 the day after this year’s conference ends).
But I digress.