40-year-old Derrick Werner was doing his job as a lineman. He was in the bucket working on a power line when his aorta lethally dissected due to improperly diagnosed Loeys-Dietz syndrome (LDS).
Derrick had already been to the emergency room. All the signs of an aorta in trouble were there, but they were sadly misdiagnosed. Derrick was sent home.
He still felt awful, but having been told he likely had pleurisy (despite a negative chest x-ray), Derrick dutifully went to work. “That’s just who he was,” said Paige, Derrick’s widow and mother of their two young children.
“They didn’t dig enough,” said Paige. “They did the chest x-ray and they did an EKG. I think there were a couple of things on the EKG…maybe something maybe not. Did bloodwork. Never did an echo. Never ordered a CT scan or an MRI.”
“The number one thing is, I just wish emergency room providers knew more about connective tissue [conditions]. It’s not just one thing, it affects everything especially their heart health and their aorta,” said Paige.
“I constantly think, ‘What if…what if people were more educated?’ Maybe Derrick would have had the same chance [as those who have survived aortic dissection],” said Paige.
Neither Derrick nor Paige knew he had LDS. “When he was younger, Derrick was misdiagnosed with EDS, and we were always told it was the type that didn’t impact cardiovascular health,’ said Paige.
Prior to his passing, Paige said Derrick had had flu-like symptoms for a week. He had sharp pain in his shoulder blades and chest pains. After being sent home from the emergency room, Derrick continued to feel bad for the next 48 hours, but he kept going to work until the day he passed away.
During autopsy, Paige said the results stated “He died from ‘cardiac tamponade’ — a direct result of aortic dissection.” Autopsy results also indicated that Derrick had a connective tissue condition.
That piece of knowledge proved not only life-saving for Derrick’s surviving relatives, but it also led to a whirlwind of urgent medical interventions during a time of intense grief.
Derrick’s sister, his father, and Paige and Derrick’s young daughter all learned they had LDS through genetic testing and diagnostic imaging (echocardiograms, CT scans, and MRIs). His sister and dad had aortic aneurysms that required life-saving preventative surgery.
Paige was glad to find the Loeys-Dietz Syndrome Foundation, a division of the Marfan Foundation. “You want to find community and people who understand and who get it. I was really excited to find the Marfan Foundation online, the LDS Foundation online, and Aortic Hope online,” said Paige. The Marfan Foundation and our division the Loeys-Dietz Syndrome Foundation are proud to work together with Aortic Hope to raise awareness among medical professionals and laypeople about aortic dissection signs, symptoms and risk through the #ThinkAorta and #ThinkAortaThinkFamily campaigns.
Paige is so grateful to have the tools that help keep her family healthy, but at times thinking of Derrick’s loss and how education might have helped extend his life is bittersweet.
Paige said, “Knowledge is power. We know about my sister-in-law, my father-in-law, and my daughter and how we can treat them and save their lives because my husband lost his. He unfortunately was not awarded the same opportunity.”
“I want to raise awareness,” said Paige. “I just want people to know [about aortic dissection symptoms and risk related to LDS]. I want someone else to have the opportunity that Derrick didn’t.”
For media inquiries, please contact April Dawn Shinske (mailto: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.