When I was younger, I thought I was the only one with Cerebral Palsy because I didn’t see any other child or adult with the condition. Where are they? Who are they? Are they just like me? It wasn’t until I was in my teenage years, when I met others with Cerebral Palsy and as it is said, Familiarity brought comfort.
Worldwide, there is an estimated 17 million people with Cerebral palsy. In Africa, we don't have the data, and in Kenya, we have an estimated 60,000 Persons with the condition. Cerebral Palsy is one of the most common childhood impairments and the most misunderstood conditions. It is a neurological condition that occurs before, during, after birth which causes damage to the cerebrum part of the brain affecting the muscular and nervous system which is the movement, balance, coordination. There is no treatment or cure for the condition, it can only be managed through rehabilitation interventions.
In Kenya, Cerebral Palsy is a complex occurrence and often misunderstood because it is characterized into many other conditions. This means you can meet a child with CP who also has hearing or visual or intellectual impairments or epilepsy. The condition is mistaken between a physical impairment or an intellectual impairment. Some, it may affect the physical abilities, others it may affect the cognitive abilities and Some affects both. The condition is also different by the levels and categories of having a child with very mild cases of cerebral palsy and extremely severe cases making the condition quite individualistic to manage.
There has been progress on the support of children and adults with Cerebral Palsy and their families. In the past, Stigma and Discrimination was a major barrier for families thus lack of awareness, knowledge and information. Many children were hidden and excluded from society. This resulted in minimal government support, budget allocation, society outreach and products /services for the intervention. Currently, children are coming out, interacting
Now, parents are more aware with access to the information, society is more aware willing to be more inclusive, Public and private sectors structure more interventions at affordable and accessible levels. We still have gaps in healthcare, education, support, employment and social participation systems. However, we can see a significant shift in the status of Cerebral Palsy in Kenya, we are not where we were before and the journey is simplified.
However, we are definitely not where we are want to be: More efforts needs to be put into:
- Awareness - Increasing the distribution of information about cerebral palsy that will make the society more aware and inclusive also make the caregivers better equipped to support the child.
- Access to Interventions - Increasing the availability and affordability of cerebral palsy interventions, quality assessments, therapy services, assistive devices, medications and basic essentials. The lack of access to interventions contributes to delayed milestones.
- Availability of support systems - Increasing availability of support systems enables and empowers the families to care for the child or adult. Support systems can be financial, physical or psychosocial by government or private sectors. Managing cerebral palsy is a multi-disciplinary approach and requires collective effort
Cerebral Palsy in Kenya is an unventured community, we acknowledge that we are not where we were but we can be better in our intervention and management systems that will advance their lives of children and adults with the condition and their families.