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.

Eulália Calado

(President of the Federation of Portuguese Associations of for Cerebral Palsy (FPACP)

More Articles

FeaturedArticles

  • null-stern-hotel-switzerland-alps_dezeen_1568_4

    Lifestyle & Travel

    Jun 1, 2017

    SLEEP WITH THE STARS

    Without walls or roofs, the hotel rooms, that we show you in this Your VIP Partner edition, have a privileged view of the sky, more precisely the Swiss Alps sky - it is called Null Stern and more than a hotel, it is an unusual experience.

    ...

  • dot-watch-8-1

    Technology

    Apr 1, 2017

    DOT WATCH - FEEL THE TIME

    For those who are reading, this moment, this magazine, it is a normal exercise which doesn't require any special effort than, apparently, keeping the eyes open in order to decode graphically the letters assembling them into words.

    ...

  • 978x0

    Culture & Art

    Jun 1, 2017

    THE ETERNAL CAPTAIN

    The French consider him one of the most important personalities of their history. If such was not reducer, it could even be true. The truth is, however, this gentleman, whose picture is associate immediately to the red beanie, was...


  • Vector001

    Science & Nature

    Jul 1, 2017

    ARTIFICIAL (SHORTLY) INTELLIGENCE

    Officially launched on Toronto, Canada, on March 30, the Vector Institute already attracted an investment of over 150 million dollars from companies such as Facebook and Google, communications technology multinationals particularly...

  • MokshJewellery002.jpg__1536x0_q75_crop-scale_subsampling-2_upscale-false

    Luxury & Fashion

    Apr 1, 2017

    MOKSH AND KAMYEN - BRIGHTER THAN THE SUN

    Is there any other nation that would so much love adorning their women as peoples of India? From the top of the head, nostrils, forearms, waist, to the toe tips, in an Indian woman's arsenal there are pieces of sophisticated jewellery...

  • Depositphotos_39732177_xl-2015

    Science & Nature

    Mar 1, 2017

    EASTER ISLAND - THE MISTERY REMAINS

    It is perhaps one of the best kept secrets of mankind, the Moais, also known as the Easter Island Heads, statues carved from the rocks of the Rano Raraku volcano, which can weigh 88 tons and reach 10 meters in height, have become...


  • The Perfect Silver

    Luxury & Fashion

    Dec 31, 2015

    The Perfect Silver

    Karen Silver Design is a Silver Jewelry manufacturer, designer and wholesaler based in Thailand. Specializing in many types of silver, they provide a large variety of silver jewelry collections, with more than 20 years' experience...

  • Production Line

    Luxury & Fashion

    Dec 1, 2014

    Always look your best

    BIELITA and VITEX are two Belarussian partner companies that work for a common goal. This biggest Belarussian cosmetics producer is an example of a successful business operating for over 20 years at Belarussian and global market.

  • 1

    Business & Industry

    Jul 1, 2015

    Feeding all animals is a important mission

    From cattle feed to specialized food used by performance animals, Versele-Laga has a developed a wide range of animal and pet nutrition that answers the needs of breeders and competitors.