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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!
15 Apr 2025

Lucy's Blog - Part 10

Unexpected Finding
15 Apr 2025

Lucy's Blog - Part 11

A new diagnosis and a new physio
15 Apr 2025

Lucy's Blog: Part 12

15 Apr 2025

Lucy's Blog: Part 13

15 Apr 2025

Lucy's Blog: Part 2

by Lucy-Alexandra Atkinson
15 Apr 2025

Lucy's Blog: Part 3

by Lucy-Alexandra Atkinson
15 Apr 2025

Lucy's Blog: Part 4

by Lucy-Alexandra Atkinson
15 Apr 2025

Lucy's Blog: Part 5

by Lucy-Alexandra Atkinson
15 Apr 2025

Lucy's Blog: Part 6

15 Apr 2025

Lucy's Blog: Part 7

15 Apr 2025

Lucy's Blog: Part 8

Bittersweet Progress
15 Apr 2025

Lucy's Blog - Part 9

Whether slow or fast, progress is progress
15 Apr 2025

Lucy's Blog: The Critique of my Marfan Physique

By Lucy-Alexandra Atkinson
15 Apr 2025

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
15 Apr 2025

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.
15 Apr 2025

Image is Everything

8 Apr 2025
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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