As Marfan passes through the generations, treatment and knowledge of the condition correspondingly improves. The syndrome is a family affair for Laura who’s just completed the Scottish Kiltwalk, raising funds and hope for future  Marfans.

By Laura Sheperd

I raised funds doing the Scottish Kiltwalk because I have lived my whole life with Marfan Syndrome.

Had a great time doing the wee walk from Broughty Ferry Castle to Slessor Gardens in Dundee @kiltwalk Lots of camaraderie.

My dad died in 1983 at just age 30 of an aortic aneurysm due to having Marfans Syndrome. Very little was known about the condition back then.

My son had problems in his early teens with his knees dislocating. Then at age 26 he had a full aortic valve replacement.

I have had several surgeries in my eyes & now have lost the sight in my right eye & I'm currently waiting on further surgery in both eyes.

My grandson was diagnosed not long after birth. He has had very good medical care from birth. Just a shame that was not available for my dad, myself when I was young & my son until he was a teenager.

I am thankful & grateful for the work that is done by The Marfan Trust and Marfan Foundation. My wish is for more awareness up here in Scotland & hope to have our own Trust one day.

Here's Laura's Just Giving Page.

The Marfan Trust is registered in England and Wales under charity number 328070 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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