Kasturi raises awareness for motor neuron disease

MOTOR Neuron Disease Global Awareness Day was commemorated on Tuesday, 21 June.

Motor neuron diseases (MNDs) are a group of progressive neurological disorders that destroy motor neurons, the cells that control essential voluntary muscle activity such as speaking, walking, breathing, and swallowing. Motor neuron disease is an indiscriminate disease that can affect people of any race, colour, faith or economic status. Its diagnosis affects more than just the patient, rippling out to family, friends, workmates and carers.

This Motor Neuron Disease Global Awareness Day on 21 June aimed to generate awareness about the condition and encouraged the community to join the fight and spread the word.

Local woman, Kasturi Pillay,represents the Motor Neuron Disease Association of South Africa (MNDA), as a consultant in Durban and surrounding areas. She became a consultant as a result of a significant chapter in her life. “This chapter has changed me as a person, and changed the way I view life as a whole. For five years, every single day, my family, three young children and I, fought the struggle with my husband. I lived through all the phases of motor neuron disease, with losing my dear husband to this horrible condition, and it’s made me a stronger person to go out and educate people, families and care givers on how to look after and deal with patients in this condition,” she said.

Kasturi runs a support group meeting once a month for patients and families and also does home visits to support patients with the different stages of the motor neuron disease, which can be very progressive and patients cannot rarely leave home.

“Motor neuron disease is a muscular degenerative disease, it is a horrible condition that leaves people trapped in a physically disabled body, but the saddest part of it all, is that their highly active and intelligent minds are confined in their disabled bodies. Can you imagine having a mind that is passionate to live but physically not being able to, can you imagine having a thousand words to say, but no voice to convey it to the world? Patients worldwide are faced with numerous challenges everyday in their lives, it is a struggle that effects everyone who knows them in some way,” she said.

She said this incurable disease is quite a rare condition, however it is becoming known in society after icon, Springbok rugby player, Joost van der Westhuizen, was diagnosed.

“All we can do to help patients is to live a comfortable and worthy life,” she said.

The Association's mission statement is to provide and promote the best possible support for people living with MND, their families and carers. The Association loans out equipment such as wheelchairs, commodes and suction machines, and sends out quarterly newsletters to keep patients and professionals up to date with research and events.

MNDA is a voluntary organisation and it is important to give patients the opportunity to share experiences and let them know that many other concerned people are aware of their problems and can help to relive their senses of isolation.

“All we have is hope, a driving force for the global community suffering with the disease and the alliance as we work together to achieve the one hope and one goal, we all share for the future – a world free of the disease,” she said.

To find out more, contact Kasturi on 083 777 2029 or kasturipillay@telkomsa.net