Health walk held to create awareness on ALS disease

A Health walk was on Saturday organized by Mrs Naa Kwale Susan Chinery to create awareness on the Amyotrophic Lateral Sclerosis (ALS) disease in Accra.

The walk coincided with the National Walk to defeat the ALS disease in Washington D.C. also being held on the same day.

The walk which was an opportunity to bring hope to people living with ALS all over the world and to raise money for a cure started at about 0600 hrs from the +233 Jazz Club on the Ring Road through to the 37 Military Hospital and back.

Mrs Chinery, who is popularly known as “Nee Quartey”, has been battling with the ALS disease for the past two years.

The ALS which is also known as “Lou Gehrig” disease is a very progressive disease which attacks the motor-neuron cells in the brain and spinal cord and eventually affects a person's ability to move and even breathe but currently has no cure.

Dr Albert Akpalu, a Neurologist at the Korle-Bu Teaching Hospital, said about 10 percent of people affected by disease were due to genetically ascribed conditions, whilst the cause for 90 percent of the rest are quite unknown.

He said the disease affects one’s muscle and nerve connection through the spinal chord which was is a continuous progressive process, saying, “there were about 40 people affected with the disease in Ghana, whilst some people have passed away”.

Dr Akpalu said people affected by the ALS have difficulty in breathing and swallowing and must be supported to do all that and some experts think trauma, an accident or surgery could triggers the event.

He said there are quite a number of people with motor neuron disease or ALS and that the lifespan of those people were below 5years from the time of diagnose.

The Neurologist said the diagnosis of ALS was exclusive of all other conditions before making that diagnosis.

He said a drug which slows down the progression of the disease has been discovered but expensive, adding, “one tablet of such medicine is about 30 US dollars (about 120 cedis) which you are to take twice daily.”

“How many people can afford the medicine, intensive care and respiratory test”, he said.

Dr Akpalu said there was the need to increase awareness creation, detection and early diagnosis and prevention to help improve the patient's quality of life.

“Quality of life means that we need facilities for physiotherapy, occupational therapy, respiratory support and feeding.

He said there are about only seven neurologists in the country which is not enough and the lack of physiotherapist and occupational therapist to deal with such conditions technically.

Mr Victor Smith, former Ghana Ambassador to the United Kingdom, who participated in the walk, appealed to Government to help the families of the affected victims in the country.

He said the disease is gradually becoming endemic in the world and calls researchers to critically look for ways of finding a cure to the disease.

Ms Katsrina Quarry, Human Resource Manager at Social Ghana, a Digital Advertising Firm and niece of the Mrs Chinery, said since the time of her aunt’s diagnosis, she lost the ability to orally speak, and has very little muscle function from the neck down.

She said the ALS Association revealed that the average life expectancy for those battling with the disease was between two and five years, adding that, “10 per cent of ALS sufferers live 10 years past diagnosis.”

A donation for research for a cure, please sign up and donate to Susan's Team, UNITE FOR ALS, spearheaded by her daughter Alexis Chinery via this link:

http://web.alsa.org/goto/UniteforALS, and remember to mark your donation "IN HONOUR OF SUSAN CHINERY".

Also donations in Ghana may also be sent to MTN Mobile Money number +233 244 325 435.