Connect Issues Spring 2021

BENNETT STILL ENJOYING LIFE IN HIS 70S

Bennett’s story begins with a physical that occurred during elementary school in Baltimore in the 1950s. At the time, it was common for there to be on-site physicians in schools and the doctor at Bennett’s school recognized that something was different about him. As luck would have it, they were referred to Dr. Victor McKusick at Johns Hopkins, who unbeknownst to any of them, would later become known as the Father of Medical Genetics, and a pioneer in Marfan syndrome research and patient care. Dr. McKusick noticed that Bennett had some outward features that indicated he had Marfan syn- drome. The diagnosis was confirmed, but Bennett carried on with his life doing the things he loved the most. It was 1954, so very little was known or avail- able to treat or prevent the complications of Marfan. “I played basketball, baseball, and did some weightlifting…probably all the things I shouldn’t have been doing,” Bennett says now, with a chuckle from his home in South Florida. Aside from when his doctors recognized a lens issue with Bennett’s eyes, there were no other noticeable hindrances to his day- to-day life. However, in October of 1984, on a hiking trip with his wife to Yosemite National Park, Bennett became aware that something was not right. He alerted his wife and wondered what could be wrong as he had shortnesss of breath, though he had climbed similar mountains without issue before. He asked her if she also felt short of breath. She didn’t. They moved on with their trip, but the shortness of breath stayed.

It was not until he was back home that he learned something was wrong, really wrong. Bennett’s doctor sent him for imaging, which showed his aorta had enlarged to 7.5 cm. When he heard this news, his first call was to his childhood doctor, Dr. McKusick, who remembered him very clearly and told him to get on the next plane to Baltimore. Dr. McKusick and Dr. Reid Pyeritz met Bennett at the hospital the next day. Imaging at Hop- kins found that the situation was even more alarming. Bennett’s aorta was not 7.5 cm, it was 10.5 cm. Incredibly, Bennett benefited from the skills of yet another expert in the field. This time, it was Dr. Vincent Gott, a pioneer in aortic surgery for people with Marfan syndrome. The procedure went well and Bennett returned home and took a few months off until he was back to his optimal health. Now in his 70s, Bennett knows his limitations, but he does not let them restrain him excessively. To this day, 37 years later, he exercises five days a week, maintains a healthy diet, and sees his doctors on a regular basis. He’s a firm believer in a “glass half full” attitude, a perspective he passed to his son and grandson who also live their lives fully, despite having inherited Marfan syndrome. Working with these pioneering doctors gave Bennett the chance to receive the best quality care when Marfan was only just beginning to be understood. His family recognizes the importance of seeking out the best in the field, which led to Bennett’s son and grandson being proactive in their own treatment. Today, they all benefit from all the information that is now available to those with Marfan syndrome. What started with two chance encounters with three of Marfan’s greatest experts has resulted in full and happy lives for Bennett and his family.

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Marfan.org