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.
Last year, after missing the conferences for many years, I went back to The Marfan Foundation annual family conference, which was held in Los Angeles. Perhaps the thought of a trip to Los Angeles was part of the draw. Being in California is great, and being in the hotel next door to where the Academy Awards had been held was thrilling. Seeing the Hollywood sign in the hills above me was terrific but, more than anything, I was reminded how these conferences really can be life-changing. I hope to never miss one again!
To be honest, I think another reason that I previously stopped going to the conference was that I thought I knew all that I needed to know. On Halloween night of 1994, I suffered an aortic rupture. While I knew I had Marfan syndrome, I was more concerned about its effect on my joints than on my aorta. Obviously, I was wrong, and that incident got my attention. After healing a bit from surgery to replace my aortic valve and my aortic arch, I connected with the Foundation and learned all I could. After another aortic dissection a year later, I began learning more and attending the annual conferences so that I could became as much of an expert as I could. Ultimately, I had six surgeries on my aorta, and a number of smaller procedures over a period of about 15 years. During that time, and up until my decision to go to L.A., my participation and interest in the Foundation had gradually waned. In short, after having my entire aorta replaced and surviving a battle with endocarditis and septicemia, I felt like I pretty well knew all I needed to know about the syndrome.
Then came our son; or, at least, the idea of him. Mary and I met and got married before my last two (and most extensive) surgeries. When we got married, we decided not to have children. But then we learned about some very hopeful research on medications that showed promise for reducing aortic enlargement in people with Marfan syndrome, for preventing the aorta from dilating to a dangerous size. We began to rethink our decision. Because of this research supported by the Foundation, improved surgical methods and other advances, which are discussed every year at the conference, and for many more personal reasons, we decided to have a child. He was born in March. Two months and a genetic test later, he was diagnosed with Marfan syndrome.
The most common feedback you hear from people who have been to a marfan conference is how excited they are to see others that look just like them. I couldn’t agree more. Seeing a room full of folks with narrow faces, and long, skinny limbs gives me hope. Last year in L.A., and I am sure this year in Baltimore, I was and will again be amazed by all the people who look like me.
But the annual conference is important and helpful for many other reasons too. I may learn of new advances that will continue to give me hope. I might learn of new ways to manage my family’s everyday life. I will nurture old friendships and make new ones. I will certainly help to strengthen an organization that has made my life better and will improve the life of my family and was partially responsible for saving my life and creating the life of my son.
The annual conference helps us to live out the Foundation’s new motto: Know the signs. Fight for Victory.
Jay Elliott is a member of The Marfan Foundation and currently resides in St. Louis, where he is a member of the local chapter. Jay is an active contributor to the marfan community and its goals.