NNUH heart experts hold Marfan syndrome open day

Medical experts in a hereditary condition called Marfan syndrome have organised an open morning being held this month at the Norfolk and Norwich University Hospital for people with the rare condition.

The Grown Up Congenital Heart Disease (GUCH) team at the university hospital is holding a Marfan syndrome open morning on Saturday October 16th in the Benjamin Gooch Lecture Theatre at the Norfolk and Norwich University Hospital.

Marfan syndrome is named after the French doctor who first identified the condition in 1896. Marfan syndrome is caused by a genetic defect and leads to problems with the body’s connective tissue. The syndrome can lead to a number of heart problems as well as affecting the spine, eyesight and lungs.

The open morning on October 16 has been designed for patients with Marfan syndrome and their relatives. The morning starts at 9am and will finish at 1pm. The Cardiology GUCH team at NNUH provides a dedicated clinic for patients with the syndrome. The GUCH team in Norwich currently looks after 150 patients with Marfan syndrome.

NNUH consultant cardiologist and clinical director Dr Leisa Freeman, who is also medical advisor to the Marfan Association UK, will be giving a talk on the new service. Also speaking will be a physiologist, radiologist, physiotherapist and specialist nurses from NNUH, as well as a geneticist from Cambridge, and a member of the cardio-thoracic team at Papworth.

Diane Rust, chair of the Marfan Association UK, will also be talking about information and support available to people with Marfan syndrome.

If people with Marfan syndrome or their relatives wish to attend they can call 01603 287002 or email susan.gilbert@nnuh.nhs.uk