Cerebral Palsy: What the community considers witchcraft, and what you ought to know

By Aisha Naava

One of the key challenges faced by individuals with cerebral palsy in Uganda is the limited awareness and understanding of the condition. In many communities, with a prevalence of traditional beliefs and practices, there can be misunderstandings and misconceptions regarding medical conditions such as cerebral palsy.

These misconceptions have greatly contributed to societal exclusion and hinderance to the integration of affected individuals into various aspects of community life. Educational opportunities for children with cerebral palsy may be limited, exacerbating the cycle of poverty and dependence.

Therefore, there is a need to create awareness of preventive measures of cerebral palsy and to address the misconceptions like superstitions and cultural beliefs, lack of medical knowledge and stigmatisation surrounding cerebral palsy in communities where witchcraft accusations may be prevalent if we are to reduce these cases.

Globally, approximately 18 million people of all ages have cerebral palsy. Though Cerebral palsy prevalence is higher in low and middle-income countries than in high-income countries, research shows that in the United States, 1 in 323 children are diagnosed with cerebral palsy, with 40% being born prematurely and 60% at term. In Africa, there is a defined prevalence rate of 3.1 per 1000 exceeding that typically found in high-income settings.

In Uganda, a study was carried out in 2017 and showed that crude cerebral palsy had increased from 2.7 to 2.9 cases per 1000 children. This presents a significant public health concern.

Cerebral palsy is a physical disability caused by a brain injury (cerebral motor cortex) during pregnancy, birth or shortly after birth. This disability may be caused by genetic abnormalities, congenital brain malformations, maternal infections, fevers or foetal injury. It affects movement, coordination, muscle tone and control, reflexes, posture and balance, and it’s the most common lifelong physical disability in the world. Other effects can be incontinence, impairments, scoliosis, difficulty swallowing and drinking.

While the initial brain injury does not change, cerebral palsy’s effect from years of wear and tear often changes as people age. This change can include increased stamina, walking ability and other effects, and it varies from person to person. 

There are different types of cerebral palsy which include; spastic, ataxic, athetoid (dyskinesia), hypotonic and mixed cerebral. However, the most common type is spastic cerebral palsy which affects about 80% of people with cerebral palsy. They have an increased muscle tone meaning their muscles are stiff and hence having awkward movements. 

Signs of Cerebral palsy

1. Delays in reaching development milestones for example, not sitting by 8 months or not walking by 18 months
2. Seeming too stiff or too floppy (hypotonia) with weak arms and legs
3. Random, uncontrolled movements; fidgety, jerky or clumsy movements
4. Muscle spasms, shaking hands (tremors), unsteady gait, loss of coordination
5. These signs usually appear in the first month of life but many are not diagnosed until age of years or later.

Treatment for Cerebral Palsy

• Stem cell therapy is an emerging treatment for a variety of conditions and offers hope to treat cerebral palsy. This process creates the opportunity to take the stem cells and manipulate them to replace the damaged myelin sheath and protect the neuron from dying, thus avoiding further brain damage.  The easiest stem cells to access and use are found in the umbilical cord blood of newborns
• Physiotherapy and rehabilitation using orthotic assistive devices and technologies
• Medications like anticonvulsants, antidepressants, anti-inflammatories, muscle relaxants, benzodiazepines, nerve blocks, and analgesics.
• Surgery; selective dorsal rhizotomy is a neurological procedure to severe one or more sensory nerves that are causing muscle spasticity in the legs and feet hence relieving muscle tightness and allowing easy movement.

How to prevent Cerebral Palsy

• Good medical care during pregnancy and birth can help to reduce the risk that your baby has cerebral palsy.
• Using a crib with bed rails
• Making sure that your child is vaccinated for all common infant infections
• Avoid shaking the baby
• Never leave a child on high countertops or surfaces unattended
• Using the correct car seat for the child’s weight and height       

NOTE; Though there is no cure for cerebral palsy and the condition lasts for life, children having more mobility, better medical care and adaptive equipment with greater autonomy and independence have longer life experience.           

In conclusion, there is still a need to address awareness gaps, improve access to healthcare and rehabilitation services, and advocate for the rights and inclusion of individuals with cerebral palsy to create a more supportive environment for those affected by this neurological condition in Uganda.

The author; Aisha Naava, is a nursing officer working with Kawolo General Hospital.