The Marfan Foundation’s Teen Council is a force to be reckoned with now. And they are clearly our future movers and shakers. This group of teens – who either have Marfan or a related disorder or have a sibling who is affected – is the voice of our adolescent community. Their primary focus is planning for the annual conference each summer; however, plans are underway for even greater involvement throughout the year.
Topics: Marfan Conference
Reprinted with permission from This Blonde Brunette.
Mi Amor...A Special Valentine's Reminder To All.
They say when you know, you know. This must have been true in some cases. It feels that way in mine. February is known as the month of LOVE.
My journey with Marfan syndrome has been a long and complicated one. I was first tested when I was 19. At that time, the tests were inconclusive. I have some of the features of Marfan syndrome, such as pectus carinatum (pigeon chest), and was very tall and thin, but my measurements were borderline. I had no known family history, and I hadn't developed any serious heart problems. They told me this is not uncommon because I was still young and many people don't begin to have problems until they are older. The doctors couldn’t confirm that I had Marfan syndrome, but they also couldn’t confirm that I didn’t have it. So here I was in limbo, and limbo was where I stayed for a long time.
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.