Nikolas Kontoyannis is the source of inspiration for this annual Symposium.
In 1981 Nikolas was barely four weeks old when he was rushed to Great Ormond Street Hospital in London with inexplicable skin rashes over his entire body and inside his mouth, secreting fluid. He was treated with topical mustard gas for this but his condition was deemed critical. Nikolas was put under the direct care of Dr. Jon Pritchard, a pediatric oncologist, who became his primary doctor.
The diagnosis: Histiocytosis X
The prognosis: Slim chances of survival
At the time, little was known about the disease and its pathological structure was difficult to discern. When he was less than a year old, Nikolas underwent a painful mouth curettage as a direct consequence of the disease, causing deformities in the mouth. There followed an uncertain period that would disrupt Nikolas’ upbringing and life in his formative years and beyond.
Between the ages of 6 and 7 he was diagnosed with ataxia and osteoporosis. It became apparent that he was also suffering from growth deficiencies, which brought about the need for growth hormone treatment, lasting almost 4 years. Nobody knew what the future would hold for him and the threat to Nikolas’ life was ever present.
By the age of 7, CNS (Central Nervous System) involvement was detected, and Nikolas was showing signs of short term memory loss and had started to develop learning difficulties. The latter gave rise to a precarious and unsettled puberty, triggering severe psychological issues and episodes for him as he was growing up.
At 11 years of age hydrocephalus was detected. Nikolas had to have a ventriculostomy performed, shortly after which he started having seizures, prompting the need for medication which he takes to this day. Due to CNS involvement, problems and accidents relating to Nikolas’ balance, eating, drinking and movement increased over time; a fractured right hip and, when he was 29 years, a severe fall led a 6-hour operation to repair his right arm.
These and other incidents further worsened his ability to walk and balance himself unaided. Since then, Nikolas has required 24-hour assistance to ensure his safety when moving around and to live as normal and happy a life as possible.
Faced with this rare disease and having been in the dark for so long Nikolas’ parents embarked on a journey of turmoil, pain and endurance but never gave up their fight to save him and learn more. Nikolas himself, as he grew older and more acutely aware of his situation, developed a spirit of his own and has proved to be a victorious warrior in his battle against the disease.
The Nikolas Symposium is an exceptionally poignant and important aspect of his life, and he remains to this day an active and proud spokesperson for the symposium named after him.
‘The impact the disease has made on me and my life is almost beyond words. It sometimes makes me sad, angry and very tired. Sometimes my mind cannot figure it all out and the question is always, ‘why me?’ But the Symposium has shown me that I am not alone. My struggle has left me determined not to allow myself to settle for less in life…’
Nikolas Kontoyannis, 24th Nikolas Symposium, 2003