An influence on his life but not always in a good way, Marfan syndrome has inspired A Level-Student Olly’s interest in microbiology and genetics. He asked for a tour of our Sonalee laboratory and here we all are, with Jose and his brilliant MSc students.

A visit to the optician was the catalyst for a life-changing diagnosis that rippled through three generations of one family. Olly was just 5 years old when he was found to have dislocated lenses. This led to an appointment with our Medical Director, Dr Anne Child, who eventually diagnosed Olly, his sister Lexi, his father Pete and his paternal grandmother with Marfan syndrome. The condition affects them each in different ways. For Olly, it is largely his eyes and musculoskeletal system.

[pictured: Olly in conversation with MSc students Bharathi, Varsha and Chandana]

At school, Olly felt singled out by his visual problems and the measures that were taken to help him. He used a large paper size (blown up to A3), a slanting board and a magnifying globe. While helpful, these aids and props made Olly feel self-conscious and 'different'. Eventually, his lenses were removed and for a while he managed the situation, wearing both glasses (bi-focal) and contact lenses. 

However, after advice from an optometrist, Olly sought a more complex contact lens prescription which has given him 20:20 vision! He can now see the grains in wood and the bumps on walls.  He has driving vision and has just passed his test! 

Olly sticks to a stringent eye-care regime that involves a warm mask which breaks down the debris on his lids whereupon he wipes it across and away. He also uses a saline wash and keeps eye drops on him at all times.

[pictured: Olly in conversation with Dr Aragon-Martin at the Institute of Ophthalmology discussing ectopia lentis - dislocated lenses]

Olly also struggled with knee trouble that sometimes saw him using a wheelchair for long expeditions between the age of 8 and 12. His school attendance was only 45% during this very difficult time when his knee would simply give way.

He was subsequently diagnosed with osteochondritis and surgery was offered. However, Olly took a different route. After seeing a couple of physiotherapists before settling one who knew about Marfan syndrome, hydrotherapy and much time in the gym in which he concentrates on knee exercises, training his muscles to strengthen his ligaments and tendons, he is walking freely and happily. Olly visits the gym three times a week and has a personal trainer who knows his limitations. 


[pictured from left: MSc students Bharathi, Silvia, Roshanak, Chandana, Varsha, Jose, Olly, and Sam - Olly's mother]

It was a pleasure to meet Olly and his visit culminated in a feast at Wagamama.

Marfan Trust, a CIO registered as a charity in England in Wales with charity number 1198847 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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