A Marfan Syndrome Patient Finds Confidence, Gratitude at Hoag
“Just knowing my son would be under the care of this amazing dream team of doctors was like winning the medical lottery!”
Christian D’Angelo has Marfan syndrome, a genetic condition that affects the body’s connective tissue. Because connective tissue holds cells, organs and tissue together throughout the entire body, Marfan syndrome can cause serious complications involving the aorta and heart.
Marfan syndrome has always played a huge role in Christian’s life. He was only 6-years-old when his pediatrician suspected he might have this condition, due to his physical characteristics including his long arms, legs and fingers, along with his tall, thin stature. At the time, his father had died suddenly from a severe aortic dissection at the age of 40, before Christian was ever clinically diagnosed with Marfan syndrome himself. No one in Christian’s family had ever heard of Marfan syndrome, including his father.
When Christian reached the age of 18, he experienced a spontaneous collapsed lung and needed to seek treatment outside the pediatric medical world. This meant emergency treatment for Christian at Hoag, which is just down the street from his home. “It was like the planets were aligned when this happened, because we transitioned to our new adult care team with Carey O’Bryan M.D., Hoag cardiologist, and Anthony Caffarelli, M.D., director of Hoag Cardiac Surgery, director of the Elaine & Robert Matranga Aortic Center and the Newkirk Family Endowed Chair in Aortic Care,” said Lisa Jeffries, Christian’s mom.
Christian, now 24-years-old, has been followed by Dr. Caffarelli and Dr. O’Bryan for the last six years. “When I go see my doctors it doesn’t feel like a professional correspondence but more like catching up with my second family,” says Christian.
The biggest surprise came when Christian and his family found out that David Liang, M.D., Ph.D., world-renowned cardiologist and Stanford Professor of Medicine, was recruited by the Elaine & Robert Matranga Aortic Center to take care of patients living with genetic conditions. “Just knowing my son would be under the care of this amazing dream team of doctors was like winning the medical lottery!” said Lisa.
Dr. Liang recently joined Hoag’s team to expand care for patients with Marfan syndrome and other related conditions, such as Loeys-Dietz syndrome, Vascular Ehlers-Danlos syndrome and Familial Thoracic Aortic Aneurysm and Dissection (FTAAD) in Southern California.
“The reputation for patient care and dedication has made Hoag an industry leader in cardiac and aortic care,” said Dr. Liang. “You should care for patients as if they were your family members. That’s the difference between just developing medical skills and developing an attitude about caring for patients. That’s what I see here at Hoag, and I’m excited to be a part of this community.”
“We are very excited to partner with Dr. Liang,” said Dr. Caffarelli. “It speaks volumes about our commitment to our community that we are expanding the services we offer to include highly specialized doctors who provide top-notch care for patients with rare conditions.”