Nicaraguan primary immunodeficiencies’ (PIDs) patients are starting to get organised. The country doesn’t have official numbers yet but the first diagnosis of PIDs started to happen in 2011. It was only in 2019 that a few parents of affected children (ages between 2 and 5 years old) started monthly meetings that led to the creation of the “Asociación NICARAGUENSE DE PACIENTES CON INMUNODEFICIENCIAS PRIMARIAS – ANIPIDP”, IPOPI’s latest associate member.
So far ANIPIDP has managed to help in the diagnosis of 20 patients by facilitating access to diagnostics studies and has also contributed to their access to treatment and subsequent improvement of their quality of life.
The group has started an information sharing campaign to inform parents and doctors about the symptoms and warning signs that may be an indicator that something isn’t right and that, when unattended, may lead to severe complications. Until the end of the year ANIPIDP is expecting to take part in several fairs and radio interviews and to become more active online, with a website and social media pages. Nicaragua is fighting for better PID patient management!