News

Category: Blog

9 Truths Only People with Marfan Syndrome Will Understand

Whether you’re newly diagnosed with Marfans or you’ve grown up with the condition, there might be a thing or two here that you can relate to.
25 Jun 2025

Lucy's Blog: Expect the Unexpected

29 Nov 2024

Lucy's Blog: Part 13

29 Sep 2024

Lucy's Blog: Part 12

7 Aug 2024

Lucy's Blog - Part 11

A new diagnosis and a new physio
15 Jul 2024

Lucy's Blog - Part 10

Unexpected Finding
26 Mar 2024

Lucy's Blog - Part 9

Whether slow or fast, progress is progress
6 Mar 2024

Lucy's Blog: Part 8

Bittersweet Progress
6 Nov 2023

Lucy's Blog: Part 7

16 Jul 2023

Lucy's Blog: Part 6

28 Feb 2023

Lucy's Blog: Part 5

by Lucy-Alexandra Atkinson
15 Nov 2022

Dressing Tall

The long and the short of it is ...
25 Jul 2022

Lucy's Blog: Part 4

by Lucy-Alexandra Atkinson
18 Jul 2022

Lucy and Marfan Awareness

A condition as complex as MFS can leave you feeling isolated and alone, especially when doctors cannot help you navigate your medical journey ...
21 Feb 2022

Lucy's Blog: Part 3

by Lucy-Alexandra Atkinson
21 Oct 2021

Lucy's Blog: Part 2

by Lucy-Alexandra Atkinson
1 Jul 2021

Lucy's Blog: The Critique of my Marfan Physique

By Lucy-Alexandra Atkinson
27 May 2021

Martyn's Story: How Can I Help You?

Let's Start a Conversation about Marfan Syndrome!
22 Apr 2021

Research As Empowerment!

When your past is a blank page you are left feeling powerless. This story highlights the need for more research and awareness of Marfan syndrome
4 Dec 2020

Hiding in Plain Sight

Our guest blogger, Lucy, describes the challenges of living in near-constant pain, the main source of which is her Marfan syndrome.
8 Oct 2020

Why Comprehensive Travel Insurance is important!

​The easing of travel restrictions will prompt many to hop on a jet plane in search of sea, sun and sand. Do you have everything you need?
2 Oct 2020
Members only

Marfan Syndrome Can Be a Pain in the Behind

Marfan syndrome can be many things, including a pain in the behind ... as Marfan warrior and prolific blogger Lucy Atkinson discovered to her horror
6 Sep 2020
Members only

Life in Lockdown with Marfan Syndrome

As someone with Marfan syndrome I wanted to write something useful about what life has been like in lockdown during the coronavirus pandemic
16 Jun 2020

Going in to Labour with Marfan Syndrome

So you’re pregnant with Marfan syndrome, and you’re tackling all the challenges that brings, that’s even before you’ve tackled the labour!
6 Dec 2018
Members only

What to Expect When You’re Pregnant with Marfan Syndrome

Whether you knew you had Marfan Syndrome before you got pregnant or you've just found out, you may be wondering what you should expect.
5 Dec 2018
Members only
Marfan Trust, a CIO registered as a charity in England in Wales with charity number 1198847 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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