What Led to the Diagnosis of Marfan Syndrome?

How Does it Affect Everyday Life?

Why is Greater Awareness of the Condition Important?

In this, the grand finale to Marfan Awareness Month we put you, our supporters, in the spotlight! There is power in the spoken word, as you have so eloquently proven in our three-part Supporters’ Film! Reflecting the differences that exist between those with the syndrome, Charlotte, Christopher, Helen & Laura, Joy (aptly named!), Lucy and our Chairman Michael, talk of their diagnosis and everyday life, while uniting in their clarion call for greater awareness.Please remember this was recorded and edited on Victoria’s ancient laptop hence its ‘homespun’ quality!!! Meantime, our challenge today, St David’s Day …join our conversation. Give us a glimpse into your life with Marfan syndrome.

Join us in our Search For the Missing 15,000- those with Marfan syndrome unknown to the Marfan Trust.

To Help Us Spread The Word:

SHARE this post to show you CARE

EMAIL [email protected] for leaflets to distribute to your local GP surgery, optician, shoe shop

DONATE the price of your morning brew

Additional Resources

Natasha's Story: Marfan Awareness Month - Never was the need for greater awareness made more tragically apparent

From the Heart: Victoria speaks to Consultant Cardiac Surgeon, Professor John Pepper, and Consultant Cardiologist, Professor Graham Stuart. 

Christopher’s Story: Marfan Awareness Month- This is the story of Christopher whose Marfan syndrome was captured at an early age, allowing him to claim his condition.

In Good Company- Marfan syndrome is writ large on the cinema screen, and lurks behind the sensational sounds of Broadway - here are three notable names.

'Awareness Saves Lives: Wayne & Lewis' Story' - This is the story of Wayne and Lewis - of a life lost and a life shaped by Marfan syndrome.

Lost in Translation - Marfan Encyclopaedia: This article elucidates, delineates and celebrates marfanoid medicalise in a comprehensive list!

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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