by Savvas Savva, Secretary of the Cyprus Primary Immunodeficiencies and Friends Association, brother of a PID patient
In 1983, I heard for the very first time the word “Immunodeficiency”. I was 15 and this was how my little sister, Maria Charalambous, condition was called. She was diagnosed when she was 11 and it took us as many years as her age to find out. 36 years on and I still meet families who ask me what immunodeficiency is and where can they seek help for their child in Cyprus. Every time, I get this question, painful memories wake up, frustration, despair, anger, anguish and pain. The pain every parent fear most, not to be able to do something for their child, feeling helpless and useless despite of how rich or poor you are or how well educated.
Living in a small island such as Cyprus and with the local medical community knowing close to nothing about primary immunodeficiencies (PIDs) it is always going to be difficult to get an early diagnosis for PID. Even in developed countries diagnosis of PIDs can be tricky and painfully slow. The main problem, common to all parts of the world, is that we do not know enough about PIDs and most importantly, the awareness among the public and the medical community is low to say the least. Visits to numerous pediatricians and doctors, test after test, hitting walls and having more questions than answers until someone stumbles on PID. It took us 11 years and numerous visits to other countries, paid out of pocket by the family, until Maria was officially diagnosed (the diagnosis was made in the UK).