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I had never heard of Marfan syndrome until it was diagnosed in my sister in 2004. It is a potentially life-threatening, inheritable condition of the connective tissue which is found throughout the body affecting the bones and ligaments, the eyes, the heart and blood vessels, the lungs, skin, tendons, joints and the nervous system. This can profoundly affect the quality of life of those with the condition, but the most serious potentially life-threatening problems involve the cardiovascular system. There is a 50% chance that the children of an individual with Marfan syndrome will inherit the condition.

There are heart related complications in my sister’s family. My sister Sarah and my nephew have both undergone a pioneering heart operation to fit a stent around the aorta to prevent it from rupture.

In retrospect, many years ago, my father who had all the symptoms of Marfan syndrome, but was undiagnosed, died from an aortic aneurysm during a heart bypass operation which was most probably related to Marfan syndrome.

As a psychologist, my personal experience of Marfan Syndrome progressed from the personal to professional as I became increasingly interested in the psychological impact of Marfan Syndrome. In particular, couples decision-making to have a biological baby, which entails a high risk pregnancy and birth when a woman has Marfan Syndrome. In 2007 this was naturally my chosen doctoral research.

Famous people who have or may have had Marfan syndrome include: Tutankhamen; Charles de Gaulle; the American President Abraham Lincoln; Joey Ramone (punk band ‘The Ramones’); Vincent Schiavelli (‘Tomorrow Never Dies’, ‘One Flew Over the Cuckoo Nest’); Jonathon Larson, the American composer, lyricist and playwright (‘Rent’, Tick, tick…..Boom!); Dame Edith Sitwell, the eccentric poet and critic; Peter Mayhew, most famously known as the hairy hero, Chewbacca, in the 1977’s film Star Wars; the composer Sir John Tavener, whose cello piece, ‘Song for Athene’, was played at Princess Diana’s funeral; Nicolo Paganini; Sergei Rachmaninov.

Over 18,000 men, women and children of differing races and ethnicity in the UK have been diagnosed with Marfan syndrome. There are most likely more that are undiagnosed. The Marfan Trust is the only charity in the UK that supports those with Marfan syndrome and their families. It raises awareness of Marfan syndrome by providing educational information and undertakes medical research to enable the best possible care and treatment for patients.

It is important to me that I am working closely with The Marfan Trust, so I can choose and follow where all the money raised will benefit those living with Marfan syndrome.

I am so excited to be running The London Marathon 2025 in aid of The Marfan Trust.

Thank you for your support, it means a huge amount.