Lyndsey's Story

The sole figure in her family affected by Marfan syndrome, Lyndsey once believed the condition was vanishingly rare. Yet as more diagnoses emerged in the wider world, her sense of isolation gave way to determination. Throughout February, Lyndsey has been fundraising for us to help raise awareness. Thank you so much, Lyndsey!

Obviously I was born with Marfan syndrome but oddly neither of my parents have it. I was born with spontaneously defective genes.

This affects my height: I'm 6ft 1 and I had my growth plates shattered at 11 years old.

I was born with dislocated lenses and had them replaced. I have also undergone a cornea transplant - it is a daily struggle with my eyesight.

My enlarged aorta is controlled with medication 💊  and it seems to be doing okay. 

I have stretchy skin and I'm very flexible. 

I also display the usual marfan syndrome effects.

So now at the age of 43 I am living independently and working hard daily at Orchid Orthopedic Solutions Sheffield.  

I decided to make people more aware of who I am and what I have plus the facct more and more people are now known to have the very uncommon Marfan syndrome and how it affects my life so I decided for February  which is Marfan syndrome awareness month I would do a Raffle which will be drawn  out  27th February 2026.

It has so far has raised £430.00.

My company, friends and family  have donated  my prizes  and ill be donating the money 💰  to Marfan Trust.