12 Years of Experience from my personal Journey with Aortic Disease and Aortic Surgery

Personal Journey

Twelve years ago, I survived something most people don’t: a Type A acute aortic dissection that tore my aortic valve and extended into my leg. Back then, I knew nothing about aortic disease. Thanks to sheer luck, timing, and a skilled surgical team, my life was saved.

That experience changed everything. I didn’t just recover—I found a mission. I dedicated my energy and time to raising awareness about aortic disease and trying to connect brilliant minds like yours to share knowledge, save lives, and inspire hope.

Today, I’ll share lessons from 12 years of working with surgeons, researchers, and patients worldwide. My hope is to inspire collaboration and provide insights into fighting aortic disease together.

The Global Challenge of Aortic Disease

Aortic diseases are often called “silent killers” because they strike suddenly and without warning. For many, the first symptom is also the last—they never reach the hospital.

Here’s a statistic: 75% of the global population lacks access to aortic surgery when needed. Many regions simply don’t have the infrastructure, resources, or trained personnel to provide life-saving interventions. For families in these areas, the impact is devastating. When an aortic disaster strikes like lightning, lives are lost, and families are left in shock. Insight of this reality pushed me to focus on prevention and awareness, not just treatment. While advanced surgery isn’t feasible everywhere, we can provide families with knowledge to make lifestyle changes and slow disease progression, giving them a fighting chance for healthier years.

Knowledge as the Lifeline using the surgeon as the first educator

For people without access to surgery, prevention becomes a vital lifeline. The key is empowerment through education in local languages. Explaining that simple, actionable steps—such as managing blood pressure, quitting smoking, maintaining a healthy weight, avoiding cocaine or steroids, and seeking regular check-ups—can add healthy years to their lives.

When families affected by aortic disease receive clear and accessible information, they are empowered to act. Over the years, surgeons, researchers, and patients have collaborated to translate, print, and share such knowledge with families in countries across Asia, Africa, and South America, in multiple languages. But these were all small efforts compared to what is possible.

Who should we prioritize in educational efforts? Let’s begin with families who’ve lost someone to acute aortic syndrome. Some researchers believe that over 50% of these cases might be linked to familial diseases—many still under-researched and unnamed, awaiting discovery.

I believe a crucial starting point in patient recovery is the words of the surgeon to the patient after surgery. Surgeons hold a unique position in the journey of an acute aortic dissection (AD) survivor. Often, they are the first to speak with a survivor after a life-threatening event. The words chosen during those moments can profoundly shape the patient’s recovery, outlook, and quality of life.

By encouraging patients to take ownership of their health—learning about aortic diseases, seeking reliable information, and connecting with other survivors—surgeons provide a foundation for long-term resilience. This approach is far more impactful than simply explaining the surgical procedure and offering general well-wishes.

After surgery, many survivors move from advanced hospitals to smaller rural hospitals with limited expertise in rare conditions like AD. This knowledge gap—spanning genetics, long-term management, and the psychological effects of trauma—can leave patients feeling unsupported.

If the surgeon can inspire the patient to take responsibility for their future recovery—by searching for information, living by the recommendations of their doctors, and finding other patients with the same aortic diagnosis to share experiences and comfort—surgeons become not just life-savers in the operating room but catalysts for long-term recovery and hope.

Collaboration and Innovation in Action

Let me share a simple example of what’s possible when we collaborate. This took place at the start of the COVID pandemic, about 20 leading aortic surgeons used social media to brainstorm ways to better share information on social media. Their solution? A simple hashtag: #AortaEd. The timing was perfect. With physical meetings on hold, digital platforms became the main communication forum for medical professionals, including aortic surgeons. Conferences moved online, enabling global participation without travel.

Our project helped surgeons label relevant information with a simple, logical tool. Inspired by hashtags like #medEd and #CardioEd, we introduced #AortaEd to streamline access to aortic knowledge. It made sharing findings easier and searching for information more efficient. Today, #AortaEd is the most widely used hashtag for aortic surgery and disease in the Western world. It’s more than a tag—it’s a movement. From conferences to cutting-edge research, it’s now a hub for real-time knowledge sharing. This simple idea, powered by volunteer collaboration, has created a global ripple effect, proving how small actions can lead to big impacts.

Call to Action: Advancing the Future of Aortic Disease Care

To the experts reading this: I challenge you to think beyond your immediate practice or research. Your knowledge can save lives—not just in the operating room but by empowering patients and families worldwide. Share your insights using free tools like #AortaEd. Make your research accessible to those who need it most. And find new insights from others who are as good experts or better than yourself.

Use the experiences of large hospitals to arrange an 'Aortic Dissection Day' in your hospital every one or two years. Simply invite all patients you saved, to 2-3 hours with some lectures on new findings around aortic disease, and let surgeons and their team meet the surviving patients over a cup of tea. This also allows survivors to meet other survivors, and here, a local self-help group can form where patients can meet other patients and share experiences and insights about their condition. This simple initiative can significantly improve the quality of life for patients.

To everyone: We must prioritize awareness and prevention. Simple steps—educating families, by translating resources to local or native languages, and sharing ideas—can give countless people a chance they wouldn’t otherwise have.

I’ll leave you with this: you belong to the brightest minds in the world, and if you unite behind a common mission, you have the power to save lives everywhere on the planet. Together, you can ensure that fewer families are devastated by aortic disease and that survivors get better information to handle their new reality when they survive thanks to the skills of you and your surgery team.

Thank you for your attention

/ Timo S?derlund, Sweden (Aortic Dissection Type A / BAV)