ATHLETES Andriani Fouseki and Nikos Korras will be travelling all the way from Greece to take part in the BUPA London 10,000 on Monday May 30th 2011 with the aim of raising thousands of pounds for The Histiocytosis Research Trust.
Both Andriani, aged 37 and Nikos, aged 32, from Loutraki, Greece, were inspired to take part in the BUPA London 10,000 after meeting 29-year-old Nikolas Kontoyannis at a physiotherapy centre in Greece - Nikolas was diagnosed with Langerhan’s Cell Histiocytosis as a baby which has left him with certain disabilities.
Nikolas explains: “I was eight weeks old when I was diagnosed with LCH – a very rare disease. Very little was known about it and I was given a 30% chance of survival. The possibility of death was very real for me and my parents were told to prepare themselves for this.
“However, against the odds and thanks to the dedication of my doctor, the late Dr Jon Pritchard and my parents at this crucial time – I survived. Others have been less fortunate and have died. In my case, the disease is currently inactive but has left me with certain disabilities that I shall carry with me for the rest of my life and the shadow of its recurrence is ever present.”
Nikolas is not alone in this. Langerhan’s Cell Histiocytosis (LCH) is a rare disease which affects 1 in 200,000 each year - in the UK alone, there are 50 new cases and it can strike both children and adults at any time. Very little is known about LCH and doctors are often unable to diagnose it because it presents with many different symptoms and as a result, diagnosis and treatment is delayed.
People suffering from LCH have too many histiocytes – a histiocyte is a type of white blood cell which normally helps to fight infection. However, for those suffering from LCH, the histiocytes gather together in large numbers causing damage to healthy parts of the body. In some ways, LCH is similar to cancer and is currently treated with chemotherapy, radiation and steroids.
Nikolas’s diagnosis prompted the formation of The Histiocytosis Research Trust which was set up to promote and fund vital scientific research into both LCH and the closely linked disorder Haemophagocytic Lymphohistiocytosis (HLH) with the aim of ensuring early diagnosis, effective treatment and a cure.
Research into both diseases has been very limited due to lack of funds and has been the result of donations and fundraising by a dedicated team of parents and supporters.
Andriani and Nikos were so moved by Nikolas’s plight they jumped at the chance to take part in the BUPA 10,000 and raise money for The H R Trust.
Nikolas said: “As soon as the idea of taking part in the race was put to them, and being aware of my life experience with Histiocytosis, without question they agreed to travel to London which has made me very happy, excited and proud. I shall be waiting for them at the finish line!”
Public and professional awareness of both LCH and HLH are essential if The H R Trust is to fund not only ongoing research, but also implement further research on a larger scale. There are also hopes to fund a dedicated nurse and an adult LCH doctor.
The H R Trust is closely linked to the Nikolas Symposium, an annual conference attended by leading doctors and scientists from all over the world and also has ties to The Artemis Association, Greece, The Histiocyte Society, Euro Histionet and The Histiocytosis Association of America.
If anyone would like to sponsor Andriani and Nikos, please visit www.justgiving.com/Nik-Kontoyannis
Nikos, Nikolas and Andriani