Blog

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

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…

Harriet G - An Introduction to Me

Hello my name is Harriet, I am 13 ½ years old and I live in West Yorkshire, England. I have always known about my Marfans but never told anyone, especially not my friends. After having back surgery for the curve in my spine (a common symptom of Marfans) in April, I decided it was time…

Chloe Gamblen - Marfan Syndrome Awareness

My name is Chloe, I’m 18 years old and I suffer with Marfan Syndrome. Marfan Syndrome is a genetic disorder that affects the connective tissue and has many physical symptoms that make it easy to detect the syndrome. It affects approximately 1 in 5000 people, and I happen to be the 1 within…