Health should not hinge on happenstance and luck, but sometimes it does. An overheard conversation, a chance meeting, or an unexpected visitor can bring a life-saving diagnosis. Julie wrote to the Marfan Trust in response to Jonny’s story to tell us of the trainee GP who unexpectedly came to her house for tea and in doing so saved her life.

By Julie

It’s Marfan Awareness Month and also timetotalk month so I’m here to talk about Marfan syndrome, for the first time. I felt so inspired and touched after reading Jonny’s Story that I have gone public on social media.

Like Jonny, I stand out in height and like Jonny, none of my doctors or consultants ever spotted there was anything unusual about me whilst I was growing up. This was despite many doctor and hospital visits when I was young. 

I’ve shared my story on my FB site and it’s been shared in turn by so many people, I’m stunned. It is so important that we get medics to understand and look out for Marfan syndrome.

In my late twenties I went travelling for a year. When I returned to the UK I moved into a shared house where one of my housemates happened to be trainee GP. One day a friend of hers happened to pop over for dinner. It was whilst watching me over the table that she wondered to my housemate whether I showed signs of something called Marfans. This chance remark was the beginning of a long medical journey! It led to many tests and assessments by multi-disciplinary teams and I am now under the care of the world-renowned Liverpool Heart and Chest Hospital who have treated my aortic aneurysm.  Open-heart surgery is now pending....

To think that I was already thirty before I heard of this condition and yet it was something that I have had all my life!

It is very important to note that Marfan syndrome is not a tall person’s condition. Yes, Marfans are usually tall but it is more the disproportionate length of your limbs relative to your body. There are so many dots to join with the syndrome and the condition hides in plain sight but once medics know the signs and symptoms they are alert and can reach a life-saving diagnosis.

To think that someone came round for dinner and saved my life – the best visitor I’ve ever had!

Why not share our PDF (scroll down the page) with the medical establishment to raise awareness and save more lives.

The Marfan Trust is registered in England and Wales under charity number 328070 at c/o 24 Oakfield Lane, Keston, Kent, BR2 6BY. Contact us at [email protected] or by phone on + 44 (0)333 011 5256
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