Around 17 million people have cerebral palsy (CP) across the world. How many people have CP in Pakistan? There is no one conclusive number. Even the closest estimates vary wildly from tens of thousands to hundreds of thousands of victims. CP is the most common physical disability in childhood the world over, yet we cannot confidently state how many Pakistanis are impacted by the disorder.
This lack of reliable data on CP-affected individuals plus an unstructured healthcare system leaves CP individuals severely under-represented when services and initiatives are being allocated. CP-impacted individuals suffer from a severe shortage of vital medical resources, including access to various kinds of therapy, medication and affordable inclusive educational facilities.
Not only is there no track of people suffering from CP, the term itself is vaguely understood by medical professionals and has zero meaning for the general public.
Stepping Up to the
challenge: Step Up Pakistan is a volunteer group that runs campaigns focused on key development issues. CPASDPakistan is our campaign to bring awareness about CP to run a voluntary registry and to serve as a referral service for CP families. Our solutions include access to affordable rehabilitation services.
CP-affected families reach out to us from all over seeking answers and information regarding this complicated medical condition. There is an urgent need for a healthcare system that can provide affordable and accessible therapy (occupational therapy, speech therapy, and physical therapy) to CP individuals throughout the country.
Our team translates tools to empower and enlighten every Pakistani, from a farmer in a remote village to a medical professional in an urban hospital setting. Our growing stock of awareness materials are available in Urdu and can be easily accessed from our website.
Walking for CP
awareness in Pakistan: We are partnered with WorldCPDay.org, a worldwide CP awareness alliance, to host awareness walks in Pakistan. We held an awareness walk at Greater Iqbal Park to mark our efforts to provide greater access and solutions to Pakistanis with CP.
Along with our volunteers, we were joined by the Pace2Life Welfare Foundation for the event. Pace2Life’s founder is the accomplished Waqas Ahmed, who himself is a CP-affected individual.
What is all the fuss about? CP-impacted individuals are being treated by a number of medical professionals, from neurologists, pediatricians to those offering miracle cures in the form of stem cell therapy. CP-affected families are often misled and their naïveté as well as desperation for a reliable regimen leads to expensive, wasteful medical procedures and unnecessary medication.
CP is a permanent life-long condition, but it is portrayed as a disease to the unsuspecting family members. Even institutions specialising in special education call CP-affected children and adults by the incorrect terms like “physical”. Those with CP are not necessarily also mentally-impaired and can benefit from informal education.
But, what is CP? CP is an umbrella term that describes a group of permanent movement disorders that appear in early childhood. It is caused by an injury to the developing brain, which mostly happens before birth. Symptoms include muscle weakness, seizures, poor coordination and stiff muscles; however, these signs and symptoms do vary from person to person. While the disorder can be clearly defined, CP does define the person that has the condition.
How can I help? You, too, can play a vital part in this national effort. Work with us to provide actionable and sustainable solutions to challenges faced by CP children and adults.
We provide guidance and referral services, free-of-charge, to CP-affected families. If you know someone who is looking for information, have them message our team on WhatsApp and write “CP” as well as the CP-affected individual’s name.
Are you connected to a school or university? We also hold CP awareness sessions and are always on the lookout for volunteers to carry the campaign further as student ambassadors.
Published in Daily Times, October 11th 2017.