Story by Sara Paul
Three days after my wedding, I sat in New York University (NYU) Langone’s massive lobby waiting for my husband to come out of critical open heart surgery. Three months after our beautiful daughter was born, I sat in that same Midtown lobby, this time waiting to hear if my 37-year-old husband would live or die.
As unlucky as I felt I and my family was, I truly knew that we were extremely lucky. Brian had been diagnosed with Marfan Syndrome in his teens, and due to that late but definitive medical report, doctors could prescribe him appropriate medication and closely and consistently monitor the inevitable growth of his aorta.
Brian’s father, his uncle, and many others with undiagnosed Marfan Syndrome, were not as lucky, as 40 years of age is the average life span for those not treated.
This February, always the month designated as Marfan Awareness Month, I am grateful to have my husband, now 43, and my six-year-old daughter Jane, who also carries the Marfan gene, happy and healthy by my side. I am grateful for the care they receive from incredible doctors at NYU and beyond, for the miracle drugs that help to stabilize the growth of the aorta, and for the support of the Marfan Foundation.
Marfan Syndrome is almost always fatal if undetected, and so, I urge everyone to visit the Marfan Foundation website and learn about this disorder. Certainly, donations to the Foundation, which promotes education, awareness, and support, are appreciated, but what matters most is knowledge. Please consider both. You can learn more at www.marfan.org, and if you or someone you know is affected by Marfan Syndrome, you can contact me at firstname.lastname@example.org.
Editor’s Note: This article was originally printed in the Staten Island Advance on February 12, 2018. Reprinted here with permission.