Advocates under there umbrella body, Uganda National Association of Cerebral Palsy (UNACP) have called for creation of more awareness of Cerebral Palsy in the general public so they can seek timely medication for persons who may be diagnosed with the cerebral disorder.
Uganda, yesterday joined the rest of the world to commemorate the ‘World Cerebral Palsy Day’ which is celebrated on 6th October every year under the theme ‘make your mark, break the barriers for people with cerebral palsy.’
Cerebral palsy is a developmental disorder and leading cause of disability in mostly young children. This is not a single disease but a group of neurological disorders that show up in infancy or childhood and permanently affects muscle movements and posture, leaving one disabled for life.
It occurs as a result of a brain injury sustained during fetal development or birth. However, because the symptoms of Cerebral palsy affect a child’s coordination and independent movement, the injury is not always diagnosed right away, especially when the symptoms are mild. Parents usually notice that something is wrong when a child fails to reach developmental milestones such as rolling over, crawling, walking or other body movements.
Learning that your child has cerebral palsy may be shocking and even upsetting at first. As a parent, you will begin to process this information and will probably have a myriad of questions and concerns. You may ask about what the future holds for your child, how abled your child will be and what your child’s life will be like.
During the celebration of the day hosted at Golf Course hotel in Kampala, parents shared stories of how devastating it was for most of them when they learnt that their children had developed the cerebral palsy disorder.
“When we got to find out that our newly born baby had contracted cerebral palsy disorder, my husband deserted, it became so hard for me to fend the family since my savings had vanished in thin air due to the back and forth movements in search for answers to what had happened to my child. I had to quit my fulltime job so I could take care of my baby. I would pick a penny from well-wishers to support the family. I later got to know about UNACP who have since supported me and my child. I regret the fact that I called my own blood a curse, my daughter is a blessing!” narrated Latipha Muzaaki, mother to Rhema Kyeeza, who has the disorder.
A one Muhumuza Steven who has lived with the disorder for more than 30 years called upon parents to never abandon giving education to their children since they might never know what the future holds for them.
“My parents realized that I had cerebral palsy when I was 3 years after showing no signs of walking and improper body structure. I started walking when I was 10 years and my daddy advised that I should start school, learn English and at least know how to beg from whites. I’ve been able to turn things around and now I own businesses and married with beautiful kids,” said Muhumuza.
Kalule Rashid, Board chairman for UNACP says they have so far registered 900 members confirmed with Cerebral palsy through the country but believes a lot of people with this kind of condition have not been brought on board due to factors that include among others funding.
“We do not have proper database of people with this kind of condition in the country, we have fallen short of funds to help us reach out to all persons with this condition in the whole country, we hope we can do more if we create awareness to the public about what Cerebral pulse really is.” Kalule noted.
More than 17 million people globally are living with this permanent disability. Statistics indicate that every 1,000 live births, there are four of those affected with cerebral palsy.
Dr. Ambrose Assimwe, a physiotherapist at Capital center medical clinic says that Cerebral palsy has got no cure yet and advises that patients should take the available treatment so that the can realize full potential, to get better and prevent complications that may come up.
“There is no cure for cerebral palsy, early diagnosis and screening to check if the child is showing any signs of intellectual or developmental delays that point to cerebral palsy should be taken up with a professional physiotherapist.”