A late diagnosis can answer a lifetime of questions, but it also reshapes the past and ripples through a family. Susan only discovered she had Marfan syndrome last year, after emergency surgery. Now recovering, Susan says that today is a good day!
Hi, My name is Susan Bradford and I live in Kilmarnock, Scotland. I'm 53 years old and I only found out that I had Marfan syndrome in February 2025.
I had a disc removed from my neck in July 2024 to help with a trapped nerve. I was seven weeks post op when I was taken ill at my friend's house. I had pain going down my shoulder blades, down to my legs. Because I had a spinal op, the hospital just thought at first it was to do with that, so I was off-loaded from the ambulance to wait in the A&E waiting room. I went downhill very fast and started vomiting blood. I was then rushed into resus where they then had to figure out what was wrong.
They sent me for a CT scan and found I had a tear in my aorta, so I was then blue-lighted to the Golden Jubilee hospital in Glasgow where Ms Burla and her team spent 13 hours operating on me to save my life. I had had a Type A dissection. My bowels stopped working for a while and I was told I would need a reversible stoma, but then the blood started going back to the bowel. It took a long time to get my bowels going again.
I spent three weeks in the ICU and seven weeks in total in hospital. I was discharged for one week and I was so sick I had to be taken into hospital again, where they then kept me in for another week as I had a leak in my heart and I was told I might need a right dissection.
I'm still very traumatized about the whole experience and I found it hard to get my head around everything. Then they told me about Marfan syndrome, which I had never heard of. I got my results in February 2025 and started a little bit of research as I then had to get my head around this information.
I'm still learning and it has given me answers for some of the things I have had over the years. As both of my parents have passed away I don't know where this has come from or If it's from me.
My only child got tested and I found out in April 2025 that he too has Marfan syndrome. He is 9 years old and we didn't tell him till June 2025 on the last day of school. He was surprisingly ok! We now both will be monitored. I'm still recovering from my open-heart surgery and I am struggling with nerve pain and I'm having an MRI scan this week to see if I have further nerve damage on top of everything else.
I'm trying to look at life positively. As every day is so precious. And I'm still trying to come to terms with the new me. TIAGD.
