Tuesday, 29 November 2016

Exciting News | Marfan Research Breakthrough

Today's post is about something that I've had to keep very tight lipped about for a little while and believe me it's not been easy! It all started about 3 weeks ago when a lovely lady from the British Heart Foundation posted in one of the Marfan FB groups I'm in, she was looking for people to get involved with something they were planning. Despite the fact that she was looking for people from specific locations I sent over an email anyway, I never turn down anything Marfan related. We chatted back and forth and when I found out what the plans were I was 100% on board and I've been wanting to shout about it ever since!

If you don't know who BHF are then let me tell you about them, they're a UK charity that funds research into improving treatment, diagnosis and prevention of cardiovascular disease. I'd always associated them with things like heart attacks, not my rare condition, so I was surprised and delighted to hear that they had been spending time researching Marfan Syndrome. This is where the secret part comes in, I've not been able to discuss anything about the research they've been doing until now and I can't wait to tell you all. I realise that it won't be as exciting for you as it is for me but I really wanted to share it anyway, especially as I'm involved in it all in some way.


My condition can cause the aorta, the main artery in your heart, to balloon and when this happens it is called an aortic aneurysm. If you read my blog then you'll know I have one of these and was recently told that I will definitely be having major open heart surgery to replace my aortic root at some point, we just don't know when. These kinds of surgeries are performed to prevent the aorta from bursting, this is called an aortic dissection, and up until now we didn't have a very clear idea about what caused this to happen in Marfan patients. However, BHF researchers at the University of Cambridge have for the first time created blood vessels in a petri dish which mimic Marfan Syndrome in human arteries.

They have managed to use these blood vessels to gain a better understanding of how the condition can lead to fatal aneurysms. Their results explain why previous trials, that have attempted to slow down the rate at which the aorta balloons, have widely been unsuccessful. Using the blood vessel model researchers have found that the pathway initially thought to be responsible for the development of aortic aneurysms in people with Marfan actually only makes up part of the picture. They were then able to tell that a separate pathway was in fact far more critical in causing the aneurysms. They hope that this new information will enable them to go on to test new drugs on the blood vessels to look at their potential to prevent people with Marfan from developing such problems. So, this research is too late to change my situation but this is big news. This means that in the future people like me might not need to have major heart surgery in their 20s or 30s, they could go on to live a healthy life for longer without any major intervention! As I said if you don't have Marfan then obviously you won't find this quite as exciting but for me this means the world.

Once I found out about it all I jumped at the chance to be involved, both my granddad and my uncle passed away quite young from aortic dissections so I want to be able to raise awareness and make a difference in any way possible. I've been included in the press release and we are really hoping that people will pick up the story, it's exciting news for the science and medical world in general. I'm not sure how big a part I'm going to play in it all yet but I know regardless that there are some amazing plans ahead that I will tell you all about in time! Thanks to the British Heart Foundation the future now looks a little brighter for myself and other Marfan sufferers, I'm excited to see what happens next.

You can learn more about it all by reading my guest blog for the BHF or their piece about the research.
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6 comments

  1. This really is amazing news, I had to have heart surgery for my loeys-dietz syndrome at 23 years old (two years ago) so I hope the research will help people.

    Jade x

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    1. It truly is! I really hope this research will in turn help people with LDS and Vascular EDS too, could lead to so much! x

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  2. Oh wow this is absolutely incredible, and it must feel amazing to be a part of it all! I'm so glad to hear that BHF do such goroundbreaking research into rarer conditions, and I really hope that it helps a whole tonne of people in the future
    Steph - www.nourishmeblog.co.uk

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    1. It really does feel amazing to be part of it in some way, even if what I'm doing is only small! x

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  3. I won't lie, I hadn't heard about this until I just read your post! You've written about it in such an informative way that doesnt use too much technical language so people know exactly what you're talking about! I'm so happy that these advances have been made and hope they help you- and everyone else with Marfans- out in some way! Well done you for being so hands on, your grandad and uncle would be proud x

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    1. I try not to use too much fancy pants medical language on here because I'm not Wikipedia, I like it to be in my words and from a personal experience perspective. I feel like people connect more and take in more info that way rather than just staring at a load of long words haha! Thank you so much lovely, I'd like to think they would be xxx

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