Promising Results for 1-session Empowered Relief Study in People with Marfan Syndrome

People with Marfan syndrome can experience pain in many areas of the body, and there’s almost no research to guide what works best, according to Stanford’s Dr. Beth Darnall. When The Marfan Foundation wanted to offer her course, Empowered Relief to its members, she thought, “Absolutely—let’s also study whether it helps them.”

Living with Marfan syndrome and related genetic aortic and vascular conditions can be challenging. These rare conditions affect connective tissue, which supports organs, joints, and blood vessels. Pain can occur in many parts of the body and often makes daily activities harder. Mental health can also be affected, with higher rates of anxiety, depression, and fatigue. 

“A large gap exists between the need for low-risk pain relief and access to pain treatment in people with Marfan and similar connective tissue disorders,” says lead researcher Dr. Luzmercy Perez. Because medical treatments alone often don’t fully address the complex pain and emotional challenges people with Marfan face, the team wanted to explore whether empowering patients through education could provide meaningful healing.

Enter Empowered Relief, a one-session pain relief skills class. The two-hour class is led by a certified instructor who explains how pain is processed in the nervous system and guides participants in creating a personalized plan for relief. Participants also get access to a free audio app and optional daily text messages to support ongoing practice. They can join anonymously and even off-camera, and family members are welcome to participate.

“In connection with organizations like the Marfan Foundation, people are often able to access the benefits of Empowered Relief free of charge,” says Andrea Friedman, Director of Community Programs at The Marfan Foundation. “The program can be accessed from home. Perhaps more importantly, it can empower people to have more control over their lives, something that many individuals in our community state they struggle with.”

In the study, 92 adults with Marfan or related syndromes across the U.S. joined the class. Attendance was high (over 80%) and most participants rated the class positively. Researchers measured pain and related symptoms before the class, immediately after, and at one, two, and three months. By three months, participants reported meaningful improvements in pain, anxiety, sleep, mood, and daily functioning.

“Pain interference improved even more than pain intensity,” Darnall noted. “This is important because reducing the ways pain disrupts life can help people do more and enjoy life more, even if the pain doesn’t fully go away.” 

“We are particularly interested in providing access to patients with the least means, the greatest pain burdens, and those who are overlooked in pain research.”

It’s important to note that the real benefit doesn’t always happen immediately. The class gives participants a clear roadmap, but lasting improvements come from applying the skills daily in the weeks and months afterward alongside other treatments. 

Online delivery was especially important for this rare condition population. Travel can be difficult for people with chronic pain, and online classes make treatment accessible to anyone with internet access. The Marfan Foundation even offered a free online class in November that drew participants from four countries, showing the global interest in this approach.

At the heart of these findings is the idea that people can gain some control over their biology and psychology. This study shows that a brief, online pain relief program may be an effective option for people with rare diseases and could help expand low-cost behavioral pain care to underserved populations worldwide. While the results are promising, future controlled trials are needed to better understand how well it works. 

“Our vision is to provide lowest cost pain care to people everywhere,” says Darnall. “We are particularly interested in providing access to patients with the least means, the greatest pain burdens, and those who are overlooked in pain research.”