Science & Nature
May 1, 2016
CEREBRAL PALSY IS NOT A RARE DISEASE, NOR IS IT IN EXTINCTION
Over the last few years, there have been a lot of discussions as far as rare diseases are concerned; that is, the ones that have a prevalence under 1 in 2000 citizens. This attention call, revealing the vulnerabilities and specificity of a citizen minority is to be praised. The Federation of Portuguese Associations for Cerebral Palsy (FAPPC - Federação das Associações Portuguesas de Paralisia Cerebral), represented by 18 Associations of Cerebral Palsy all over Portugal, including Madeira and Azores, has always encouraged and supported this kind of initiatives, because citizens with Cerebral Palsy (CP) present an unmeasurable number of special need throughout their lives.
But in reality, CP cannot be considered a rare disease, - it affects every two in 1000 children of five years of age… Actually, it is the most frequent motor disability in the paediatric age, with 200 new cases annually in Portugal (according to the Nacional Plan of Surveillance of Cerebral Palsy, for which FAPPC is responsible, integrated in the Surveillance of Cerebral Palsy in Europe, a European consortium joining 18 countries). More than 90% of these children will survive until the adult age, which they are supposed to enter at their full potential and having a life plan conciliating family, social, and, if possible, professional life.
Despite the medicine progresses, especially in the sphere of perinatal assistance, the prevalence of CP has been nearly constant over the last 50 years. Contributing for this situation is the growing survival of premature infants, which, according to the Nacional Plan of Surveillance of Cerebral Palsy, active since 2006, with children born from 2001 (in this XXI century!), represent more than 50% of the total number of annual cases of CP in Portugal. The same dynamics is observed in other high income countries.
A premature infant, of a gestational age under 28 weeks, has a risk 70 times bigger of developing a CP than a term-baby. Social measures for pregnancy support are mandatory, especially in the framework of employment, because the prematurity costs are too high for society.
For the most serious cases of CP, with higher dependence, the community should mobilize in volunteering initiatives, to reduce the physical and emotional overload of the families, allowing them moments of rest and leisure, so that the parents regain strength and will to proceed their hard job, without neglecting their other children.
The Associations for Cerebral Paralysis, which were established in Portugal over 50 years ago (the Association for Cerebral Paralysis in Lisbon was created in 1960, followed by Oporto and Coimbra ones), provide outreach services, usually of excellence, to people with CP and their families. Thanks to these Associations, and the motivation, abnegation and resilience of those who work there, the majority of which either have the disability or have close relatives with CP, we have been able to maintain one of the best national infrastructures of support to multi-disabilities in areas such as Health, Education, Sport, Employment, Social Security, etc.
One of the great challenges that FAPPC proposes to overcome at a national level, with our Associates and social partners, such as Your VIP Partner, is to create the conditions so that our citizens with Cerebral Palsy have a full integration in the community, with happy and confident families.
(President of the Federation of Portuguese Associations of for Cerebral Palsy (FPACP)