Connective Issues Spring/Summer 2026

BEYOND THE AORTA Dissections Throughout the Body When people hear the words “dissection,” they often think of the aorta. It’s the complication most often discussed in conditions like Marfan, Loeys-Dietz, and VEDS. But dissections don’t only happen in the aorta. “They can occur in the carotid, subclavian, and even lower extremity arteries,” says Dr. James Black, a vascular surgeon at Johns Hopkins Medicine and a member of the Foundation’s Professional Advisory Board. While these events are discussed less often, they are not necessarily rare. For community members, dissections beyond the aorta can look very different from person to person.

“Arterial dissections usually have the abrupt onset of severe pain. This sets it aside from other aches and pains.” Dr. James Black

Knowing the Risk Different genetic conditions carry different risks when it comes to dissections beyond the aorta. According to Dr. Black, non-aortic dissections tend to be more common in some conditions like Vascular Ehlers-Danlos syndrome (VEDS), emphasizing the importance of individualized care and awareness. For the affected community, this means understanding that vascular risk isn’t limited to one part of the body. Cristobal Castillo Lackington, who lives with VEDS, has experienced dissections in multiple arteries, including both carotids, a renal artery, a coronary artery, and the abdominal aorta. “For each dissection, my symptoms differed based on the location,” he explained. “The carotid dissections felt like a persistent headache, the abdominal one caused strong stomach pain, and the coronary dissection was sudden and caused extremely intense chest pain.” His experience highlights a key challenge: symptoms can vary dramatically depending on where the dissection occurs. Recognizing the Signs As with Cristobal, one characteristic often stands out among dissections: sudden, severe pain. “Very similar to aortic dissection, arterial dissection usually has the abrupt onset of severe pain,” said Dr. Black. “This sets it aside from other aches and pains that people will have often related to physical activity or periods of exertion.” But that pain doesn’t always present the same way. While some dissections present with sudden, severe pain, others may cause few or even no noticeable symptoms. For Elizabeth McAllister, who lives with Loeys-Dietz syndrome, it began during an everyday moment, shopping for sprinkles to bake Christmas cookies with her children. “I had sudden onset chest pain and a feeling of heavi ness,” she said. “When the pain increased and began radi

ating down my left arm…I knew something wasn’t right.” She was experiencing a spontaneous coronary artery dissection (SCAD), which led to a life-threatening heart attack. According to Dr. Black, others may experience: • Persistent headaches (carotid dissections) • Abdominal pain (mesenteric or aortic branches) • Limb symptoms or unusual discomfort • Unusual or localized pain that feels different from typical strain The common thread is that something feels different and often very intense. When Diagnosis Can Be Challenging One of the most difficult aspects of non-aortic dissec tions is that they can be harder to recognize, and some times even missed. Some may occur without symptoms, making monitoring especially important. “Still, some arterial dissections can occur asymptom atically, so the utility of surveillance for some conditions is very important,” Dr. Black said. “Surveillance screening at dedicated points of age or surveillance intervals make sense for some of these patients.” In Elizabeth’s case, additional imaging later revealed a separate carotid artery dissection that had caused no symptoms and is now being monitored. This is why aware ness is so critical. Monitoring Beyond the Aorta For people with genetic vascular conditions, care often extends beyond the aorta.

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