Even if you are fortunate enough to be diagnosed early, there is another obstacle: is there an immunologist near the area you leave? In Cyprus, we do not have one. The local doctors who monitor PID patients are pathologists, hematologists, infectious diseases’ specialists and rheumatologists. Decisions regarding appropriate treatment, dosage, not to mention the bureaucracy around the process, make things very complicated for patients and families. Sometimes it’s like going in circles, repeating yourself time and time again hoping to persuade a government official, who knows nothing about PIDs, to get a grant to cover some of the expenses.
PID diagnosis and treatment is expensive even for an average income family in Cyprus. In the last 35 years, we have taken steps forward to provide a better quality of life to the PID patients in Cyprus but there is a long road ahead and, most importantly, a lot has yet to be done to bring awareness to the public and the medical community. We have neither an immunology doctor nor an immunology nurse in the island, no day care center and we sometimes struggle to get enough supply of immunoglobulins for all the patients that need them.
Cyprus Primary Immunodeficiencies and Friends Association
In 2019, we have arranged a number of activities to bring awareness to the public through the media, radio, TV, social events along with other Rare Diseases’ organizations and, most importantly, for the 1st time, members of the Cyprus Primary Immunodeficiencies and Friends Association will be present at the annual Congress of the Cyprus Paediatrician Association and a presentation will be made from a visiting Immunologist. We consider Paediatricians the 1st line of defense against PID.
In February, leaflets and information material will be given to all public schools in Cyprus in an effort to expose the young generation to what is a Rare Disease and PID.