Patrick Maguire is retired now and we are so grateful that he spends a lot of his free time supporting the Foundation by sharing social media posts and spreading Marfan syndrome awareness everywhere. But Patrick’s story began very differently.
When he was a child – at first in Teaneck, NJ and then in Yonkers, NY – 1960s doctors weren’t sure why the little boy they were seeing had several atypical features and pectus excavatum – chest-formation issues. A bit of luck helped his family find a diagnosis when Patrick’s dad was called up from the NY National Guard.
“An Air Force doctor at Massachusetts General Hospital who had been to Johns Hopkins recognized Marfan syndrome,” said Patrick. Back then, “Doctors weren’t very optimistic.”
But Patrick says his story has been one more of hope and taking challenges in stride than pessimism, in the face of numerous Marfan-related medical issues throughout his life.
Patrick labels his growing up years as “fairly routine,” though he did experience some things that made him different amongst his peers. Medically, he had pectus excavatum surgery in 1962, had to wear a Milwaukee brace during his teenage years, had scoliosis-related surgery in 1977 and a Harrington rod.
“I lot of the things you do in high school, I didn’t do. No heavy lifting. I never did P.E. I would have loved to play football. I never rode a bike. I was six foot tall with long arms. I was skinny. My nicknames were ‘skinny’ or ‘bones’ – I stuck out like a sore thumb.” But Patrick says he was glad to have good “friends who defended’ him if he was being teased.
“In my late teens, some things were awkward. My advice to anyone experiencing that is you’ve got to kind of own that you have Marfan syndrome. Someone says, ‘You’re skinny!’ My answer was ‘Yeah. I am’!” said Patrick.
Patrick is the only person in his family known to have Marfan syndrome. He did several things that he attributes to enhancing his quality of life throughout his life: regular medical monitoring with experts (a “Marfans savvy cardiologist I saw from 1962-2014 was Roman DeSanctis at Mass General…he died last year,” and experts like Foundation PAB member Dr. Dick Devereux); “safely pushing the limits” to be as active as possible; and avoiding isolation by finding “good people” to support him along the way.
“It’s helpful to have friends,” said Patrick. “You’ve got what you’ve got – hiding away doesn’t help,” he added.
His medical journey has included many later-in-life Marfan-familiar issues. “I did have aortic root surgery in 1997, plus adding a mechanical valve. That’s when AFib started,” said Patrick. He also had mitral valve replacement surgery in 2010.
Now, he is facing some of the issues that come from typical aging, plus Marfan syndrome – but, as he has throughout his life, Patrick tries to take the changes in stride.
“My biggest aging issue is less stamina than I had before,” said Patrick. Most of aging with Marfan has been to Patrick’s mind “So inconsequential, I don’t notice,” he said.
Patrick urges those living with Marfan syndrome to take care of their mental health as well as their physical health. For the first time, this year Patrick has taken part in some of the Foundation’s Zoom webinars in order to stay up-to-date on Marfan-related science as well as connected with community.
Patrick has lived by a formula that has worked well for him: “Focus on the things you can do. If there is something that you can’t do, find something else you love to do instead.”
If you’re interested in connecting with people over 50 who are living with genetic aortic and vascular conditions, our free, virtual, no-obligation 50+ Support Group may be of interest to you. Check it out or register: Marfan Connect (50+) Support – Marfan Foundation
Find all of our in-person events, support groups, and webinars at www.marfan.org/calendar
For media inquiries or to share your story, email brandcomms@marfan.org
April Dawn Shinske is the Chief Communications and Marketing Officer for The Marfan Foundation. She is proud to lead a stellar integrated marketing and communications team and honored to help tell the amazing stories of our community members.