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The sting of cerebral palsy in Kenya

WEDNESDAY LIFE
By Gardy Chacha | August 31st 2016
Chairperson of Cerebral Palsy Society of Kenya (CPSK) Jardine Mwangeka. She believes stigma has contributed to lack of facilities friendly to patients of cerebral palsy. (PHOTO: COURTESY)

A new study, released last week, shows that stigma against cerebral palsy in Kenya is alarmingly high.

The study, conducted by Orion Foundation in partnership with Breakthrough Consulting, found that only14 per cent of Kenyans are aware of the condition.

The researchers also found that public facilities (even spaces) are not friendly to patients of cerebral palsy.

“We also found that 38 per cent of the public did not know of any schools that offers education suited to special needs students. Fifty four per cent could not name a medical facility where cerebral palsy patients can receive therapy,” Dannie-Bella Sindayigaya, the Project Coordinator at Orion pointed out.

Medics are warning that stigma makes it difficult to treat and manage the condition thereby denying patients a fair shot at normal life.

“Stigma arises mostly because our population is ignorant to available information. But there is also lack of education. Families and parents hide children with the condition because they don’t want the rest of the public to know of their existence, lest they be chided,” explains Dr Lincoln Khasakhala, consultant clinical psychologist at Capre Kenya.

Cerebral palsy, which majorly affects children, is a neurological disorder caused by brain injury or malformation that occurs while the child’s brain is developing.

The condition persists for a lifetime, adds Dr Doris Kinuthia, a Paeditrician at Aga Khan University Hospital in Nairobi.

In many cases, injury to the brain occurs during child birth, when oxygen cannot reach the brain – asphyxia. However, infection of the brain, at any stage of growth or development, can still cause the disease.

Patients of cerebral palsy lack muscle coordination, experience stiff or tight muscles, have exaggerated reflexes and may walk while dragging legs. They may also suffer excessive drooling or difficulties swallowing.

Symptoms are dependent on the extent of the illness: whether mild, moderate or severe.

“They may suffer reflux of food into the lungs and are therefore prone to conditions like pneumonia,” adds Dr Kinuthia.

According to Jardine Mwangeka, Chairperson of Cerebral Palsy Society of Kenya (CPSK) and mother to a 25-year-old cerebral palsy patient, believes stigma has contributed to lack of facilities friendly to patients of cerebral palsy.

“When I had my son, there was no agency - private or public, that assisted children born with cerebral palsy. Today we have CPSK: but it is not enough. The Government needs to come up with facilities, such as schools, so that a child born with the condition, anywhere in Kenya, can have access to education,” she said.

A person with cerebral palsy has to be washed, dressed, fed, taken to the toilet, helped to board and alight from the bus.

Since most cases of cerebral palsy occur during pregnancy, at birth and in the early life of an infant, Dr John Ong’ech, an obstetrician/gynecologist at Kenyatta National Hospital, advises pregnant mothers to follow antenatal guidelines set by World Health Organisation.

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