Fighting neurological disorder stigma

In an interview with The Zimbabwean Makina said children with neurological disorders were often neglected or kept indoors as the society and families lacked knowledge about the diseases.

Neurological disorder is a turmoil of the of the body’s nervous system which often results in paralysis, muscle weakness, poor coordination, loss of sensation, seizures, confusion, pain and altered levels of consciousness.

Leading neurological disorders include cerebral palsy, mental retardation and other developmental disorders and epilepsy.

“I have been there. In 2009 my son Bradley was born with neurological disorders and we did not know what to do. Luckily we had medical aid and he was operated seven days after birth to drain excess fluid that was in his head.

“We have firsthand experience when it comes to hurdles, problems, the physical and emotional pain and distress that one goes through as a parent, after giving birth to a child affected by Neural Tube Defects and or related conditions,” he said.

Financial difficulties, misinformation or no information at all are some of the challenges faced by parents with children affected by neurological disorders.

“Delays in getting medical assistance and support services is a stress as some children have suffered severe brain damage and are not be able to sit, walk, talk and have lost many other functions,” he added.

Out of his experience, Makina formed the PND foundation in 2011 to raise funds for underprivileged children affected by neurological disorders who could not afford medical assistance or procedures required.

“After having had a child with neurological disorder, together with my wife Alice we decided to form a foundation to assist others. The cost of the operation for our son was over $5,600, which is unaffordable for most families.

“Not only did we realised that there was need to raise funds and assist the affected children, better understanding and prevention of neurological disorders was also crucial,” he added.

Makina said they had been conducting public awareness campaigns encouraging socialisation and training for people with neurological disorders and the public in general.

“All our programmes begin with an individual child where we work to dismantle the hurdles in his or her way by obtaining treatment, education and living a healthy adult life. We are responsible and answerable first and foremost to the child.

“Change cannot happen without family and community support. We believe people living in communities are best placed to solve the problems around them thus we involve them in our programs fighting the stigma that surrounds the disease,” he said.

The World Health Organization estimated in 2006 that neurological disorders affected as many as one billion people worldwide, and identified health inequalities and social stigma as major factors contributing to the associated disability and suffering.

“Children with these disorders need effective medical support but we have few medical experts in that area. Two years ago we had five doctors only in that practice,” he said.

Makina said though his organisation was facing funding challenges to assist people affected he vowed to continue educating people about neurological disorders.

“I will continue fighting to remove stigma and improve the lives of those affected through research to prevent the disorders,” he said.