Me and my Type B – an Aortic Dissection patient story
Rachel Martin joins fellow Type B patient Simon Jones for a candid conversation about living with Loeys-Dietz syndrome, experiencing an Aortic Dissection, major aortic surgery and the physical and psychological journey of recovery.
A lifetime of unanswered questions
Rachel Martin's story began long before her Aortic Dissection.
Born with a number of health problems, Rachel underwent several operations during childhood and grew up knowing there was likely to be an underlying explanation. Her physical characteristics led doctors to suspect Marfan syndrome, but the precise cause remained uncertain.
That changed in 2008 when Rachel attended a Marfan conference in Boston and met with a geneticist. After reviewing her medical history and recent echocardiogram, the geneticist suspected a different connective tissue disorder: Loeys-Dietz syndrome. Genetic testing subsequently confirmed the diagnosis.
From then on, Rachel was very aware of her potential aortic risk and diligent about attending regular surveillance scans.
“I know I'm dissecting”
On 7 January 2024, Rachel woke early and got out of bed. Moments later, she felt an unusual sensation between her shoulder blades and immediately knew that something was seriously wrong.
Rachel describes calling for her mother and telling her simply: “I'm dissecting.”
When the ambulance arrived, however, she found herself having to explain repeatedly why she believed she was experiencing an Aortic Dissection. Rachel knew her medical history, understood her increased risk and knew that the pain she was experiencing was unlike anything she had felt before.
At hospital she was taken directly into resuscitation and underwent urgent assessment.
In this talk
- Patient: Rachel Martin
- In conversation with: Simon Jones, Trustee & Type B patient
- Event: Annual Patient Event 2026, Birmingham
- Duration: 21:12
- Topics: Type B Aortic Dissection · Loeys-Dietz Syndrome · Patient Experience · Aortic Surgery · Recovery · Psychological Wellbeing
Treatment, surgery and recovery
Rachel spent two weeks in hospital in Ireland, where the immediate priority was controlling her blood pressure. After returning home she subsequently became unwell again and required a further hospital admission.
Regular scans continued to monitor her aorta and, as her condition developed, it became clear that further intervention would be required.
Rachel eventually travelled to Liverpool for major aortic surgery. During the conversation she shares photographs documenting both the surgery itself and her recovery, including the scar she proudly describes as her “warrior scar.”
Throughout her story, Rachel talks about the importance of support from other people affected by Aortic Dissection and her determination to use her own experiences to help other patients.
The psychological impact
The conversation ends by looking beyond the physical recovery from Aortic Dissection and major surgery.
Rachel explains how much of her initial recovery was focused on practical matters — arranging rehabilitation, medical follow-up and everything else she needed after returning home.
Only later did she begin to fully process what she had been through. Hearing other people's experiences and being confronted by the realities of Aortic Dissection can, as Rachel puts it, “take your breath away.”
Rachel's story provides a powerful insight into the experience of living with a known aortic risk, recognising an Aortic Dissection when it happens, navigating complex treatment and dealing with the longer-term physical and emotional consequences.
A note about Rachel's voice: Rachel was experiencing vocal cord paralysis at the time this conversation was recorded and was awaiting further treatment. We are extremely grateful to her for sharing her story.
This conversation was recorded at the Aortic Dissection Awareness UK & Ireland Annual Patient Event 2026, held in Birmingham on 18 September 2026.
