Connective Issues Spring/Summer 2026

“Each dissection was a terrible experience, but somehow after everything, things tend to get better again.” ~Cristobal Castillo Lackington

“Surveillance usually requires imaging from head to toe,” explained Dr. Black. “But care is tailored based on individual risk and history.” Monitoring may include: • CT scans (CTA) • MRI/MRA • Ultrasound for certain peripheral arteries In many cases, dissections outside the aorta can be managed without immediate intervention. “Some peripheral arterial dissections can be watched with ultrasound,” said Dr. Black. “This allows for monitoring without repeated radiation exposure or invasive procedures. The location of the dissection plays a major role in how it “The location of the dissection outside the aorta substantially dictates both the clinical course and how patients will manifest these dissections,” said Dr. Black. Treatment decisions depend on the artery involved, the severity of the dissection, and whether blood flow is compromised. But across all scenarios, one theme is consistent: medical management matters. “The avoidance of behaviors and conditions that contribute to atherosclerosis is important,” said Dr. Black. “This means avoiding smoking, managing cholesterol, controlling blood pressure, and engaging in regular exercise [under medical guidance and supervision]. All of these are attributes of a lifelong plan.” The Emotional Aspect Beyond the physical impact, dissections can reshape how people see their health and their lives. “Sometimes I struggle with hopelessness…and the idea that something might happen,” said Cristobal, describing the emotional weight of living with repeated vascular events. Despite these challenges, he remains focused on the positive. “I like my life now.” presents and how it is treated.” Treatment and Prevention

Elizabeth also experienced a similar shift in perspective after surviving her heart attack. “Not everyone gets a second chance at life,” she said. “I try to find joy in each day.” Advocacy Can Save Lives A recurring theme across these experiences is the importance of self-advocacy. Elizabeth credits initial advocacy for her son with leading to her family’s diagnosis of Loeys-Dietz syndrome. “It feels important to understand my options and be able to ask thoughtful questions,” she said. Cristobal recognized a connection with others in the community as a way to stay grounded and hopeful. Together, their experiences provide a message to others: listen to your body, speak up, and seek care when something doesn’t feel right. Looking Ahead As awareness grows, so does the ability to detect, monitor, and treat dissections throughout the body. Dr. Black points to advances in medical therapy and a deeper understanding of these conditions as reasons for optimism. For those affected and their families, the message is to know your body, stay engaged in your care, and don’t ignore something that feels different. Because when it comes to dissections, the location matters, but awareness matters even more.

“Not everyone gets a second chance at life. I try to find joy in each day.” ~Elizabeth McAllister

If you have non-emergency medical questions, reach out to our Help & Resource Center at Marfan.org/ask .

Spring/Summer 2026 5