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Aortic Hope, with the support of Think Aorta US, launched Aortic Dissection: The Patient Guide in September 2023, Aortic Disease Awareness Month.
Aortic Hope was established in 2016 with the goal to create an organization that could meet the needs of the aortic community wherever they are in the recovery and management of aortic disease. We have done so through a variety of means such as providing educational and interactive podcasts, showcasing survivor and caregiver stories as well as offering a safe space to go for support. One question that is often brought to our attention is what life may look like post-dissection. This is in part due to the misinformation being presented on the internet as well as the lack of information provided post dissection. In addition, there is a misconception that monitoring is no longer necessary after surgery. These troubling questions are answered through Aortic Dissection: The Patient Guide.
Aortic Hope’s project lead Jeni Shaffer, Director of Administrative Services and Board Member, is also a multiple aortic dissection survivor from 2020, and says:
“Aortic Dissection: The Patient Guide is a labor of love that we all wish we had received after our aortic dissection. Written by patients, for patients, the depth and breadth of the book is comprehensive and details everything from basic education about what happened to you through recovery and life after dissection.
After my dissection, I had no idea what had happened, why, and how I was going to navigate recovery. Every fellow survivor echoes this problem, so when I found out I could take this project on, I was honored.
Aortic Dissection: The Patient Guide was originally written by our friends from Aortic Dissection Awareness UK & Ireland, and they graciously allowed Aortic Hope to bring it to the US. For more than ten months, a team of doctors, clinicians, and patients in the US revised and translated the content of the guide to become a US patient and caregiver resource. We are proud to say that this guide has been endorsed by The Society of Thoracic Surgeons (STS) and the Society for Vascular Surgery (SVS).
Aortic Hope Is a nonprofit organization whose board members are not financially compensated. To bring this guide to life, we relied on funding from generous organizations like Run for Aortic Health, Terumo and Edwards Lifesciences to be able to provide this guide at no cost to doctors, clinicians, and hospitals for their aortic dissection patients. Through charitable acts like these, our goal is to eventually provide a guide in some form to every aortic dissection patient in the US.” Patients and their caregivers may presently download a PDF of the guide from our website.”
Collectively, the board of Aortic Hope writes:
“Presenting Aortic Dissection: The Patient Guide (US edition) to the community, is a defining moment for all of us. We are confident in saying that if we had a copy of this guide to read and refer to after our aortic dissections, not only would recovery have been easier, but our outlook on our future would have been brighter sooner. Even now, for some of us over 10 years since dissecting, reading this book has enlightened and educated us.”