Early in 2010 my husband Glenn lost his mother from a dissected aortic aneurysm; 6 months later he lost his 32 year old younger brother from the same cause - both unexplained deaths at the time.  It wasn’t until Allan’s post mortem did the Coroner suggest Allan was displaying signs of Marfans Syndrome, a protein deficiency in the DNA which leads to a connective tissue disorder.  The Coroner advised all close family members to be screened.

Fortunately we lived in London and Glenn was referred for investigation at St Georges Hospital (the National Centre of Research into Marfans Syndrome) where he was diagnosed with an aortic aneurysm just above his heart.  He had surgery in January 2011 to replace his ascending aorta and unfortunately had to have a mechanical aortic valve fitted – all at the age of 35! He now lives each day on a cocktail of drugs to thin his blood so his body doesn’t reject his heart valve (which involves fortnightly blood tests), control his heart rate and blood pressure to
reduce further occurrences of aneurysms and pain killers to ease the pain in his body from his condition.  Since surgery and recovery Glenn has also had a stroke in 2014 which continues to affect him still today.

After significant research by the Marfans team it transpires Glenn does not have Marfans Syndrome but has a rarer genetic condition known as Mothers Against Decapentaplegic Homolog 3 (SMAD3); which is in the same family as Marfans and is known to affect mainly the body’s eyes, skeleton and heart in the same way as Marfans.

The Marfans team and the Marfans Trust have been pivotal in diagnosing, remedying and supporting Glenn and his condition.  This same support was also extended to other members of his family who have also since been diagnosed with SMAD3 and had the same surgery.

I am running the 2017 London Marathon to raise money for Marfans Trust to continue research into a relatively unknown but horrific condition and to support individuals and families affected by this horrific and debilitating condition.