Blog

Keep up to date with the work of the Marfan Trust charity, find out all our News, Events and research here.

Harriet G - Got my 6 month update after back surgery!

So it’s actually been a really good week! On Monday I got a letter telling me I had been selected to be a Science Ambassador by my school and inviting me to a training day on the Thursday! I was really excited as I have a real passion for Science, especially Biology-I find the human body and how it…

Lucy Atkinson - Unexpected Concern

It's been two days since my last Cardiology appointment & I'm still thinking it over. I haven't discussed it with anyone, but it's been on my mind a lot. I was there for my regular check up and I was given the results of my last echo. The Doctor said it looked reassuring overall, but my aorta has…

Harriet G - I would not enjoy recovering in a strangers spare room!

It has been an interesting fortnight, not least because last week there were headlines saying the NHS were considering letting people recover in others spare rooms! I know it’s unlikely to happen to under 18’s, but I find it deeply concerning that it is even being considered. We all know the NHS is…

Harriet G - Living a normal life

 In the last two weeks I haven’t had any appointments and no major issues. I think it’s the best time time to mention, you can live a normal life! There may be limitations but it is possible to to have fun, enjoy yourself and do things like go on holiday and days out with your family. There seems…

Harriet G - Things Change Quickly

Last time I talked a bit about me, and about why I decided to do this blog. The other blogs on this page give a great explanation of what Marfans syndrome is, so I don’t feel the need to explain it at great length. In summary, it is a connective tissue disorder that manifests in a variety…

Lucy Atkinson - How I feel About Marfan Syndrome...

I said last time that I wanted to discuss Marfan syndrome in my next blog so I should start by explaining what that actually is. Marfan syndrome is a rare connective tissue disease that only effects 1 in every 5,000 people. In most cases, it's passed on through inheritance, meaning it runs in the…