Unmasking sickle cell

From malaria treatment to bitter herbs, people with sickle cell are not having it easy when seeking treatment.

A study done at Queen Elizabeth Central Hospital in 2011 among children aged between seven and sixteen estimates that up to three in every 100 Malawians are born with the red blood cells disorder, but many go undetected or receive wrong treatment.

Entitled Sickle Cell Disease in Malawi Children is Associated with Restrictive Spirometry: A Cross Sectional Survey, the study was published by the US National Centre for Biotechnology Information. 

Peter and Agnes Nkwanda are concerned that thousands die without knowing they had the otherwise manageable disease.

The Blantyre-based couple lost their son to sickle cell in 2011.

Last week, they launched a charity to raise public awareness and campaign for quality treatment, care and support for the genetic condition that causes shortage of red blood cells.

“It’s human nature to help others not go through painful experiences that we have undergone”, says Peter. “Our decision to establish the foundation rests on this basic human principle.”

According to a study published in The Lancet medical journal of August 2019, some 50 to 90 percent of children born with sickle cell disease in Africa die before their fifth birthday.

Moved by the statistics, the Nkwandas have embraced their grief and search for closure into firepower to bring hope and accurate information to those who need it most.

They hope their fight against sickle cell will help save people living with the condition.

On the tenth memorial of the passing of their six-year-old son Etienne, the couple teamed up with like-minded citizens to launch a sickle cell foundation as a vehicle for reaching out to people around them with vital messages on this manageable medical condition.

The couple has fond memories of “a happy, naughty child.”

The memories also include the worries that parents have when a child gets sick.

“Our main source of worry was the possibility of him developing a serious condition later in life,” says Peter.

The formation of the not-for-profit organisation has excited health workers who attend to people with the disease caused by C-shaped red blood cell disorders.

“I am happy that children with sickle cell will get support,” says Dr George Chagaluka, who specialises in treating children. “While the estimates show that between 190 000 and 570 000 people have the sickle cell, less than a thousand patients appear in records at the country’s referral hospitals.”

The paediatrician gave a glimpse of the scanty figures at the receiving end of the cases that mostly go undetected and untreated.

He states: “At Queen Elizabeth Central Hospital in Blantyre, we see a cohort of about 200 patients. At Kamuzu Central Hospital, they attend to about 200 as well.

“At Mzuzu Central Hospital, they see 500 patients. Where do the rest go? They die without being diagnosed. Some are treated as having anaemia due to malaria.”

Chagaluka says most patients start to experience bone pain, yellow eyes, anaemia or recurrent infections at six months.

The Etienne Nkwanda Sickle Cell Foundation (Ensicef), named after the deceased boy, seeks to bridge the knowledge gap which leads patients to suffer or die without accessing the right remedy.

Twelusiwe Kayange has become a fierce warrior against the disease after being diagnosed with it at the age of 24.

For years, the 32-year-old man fought the condition in the dark. He was diagnosed with the disease when his brother took him from Misuku Hills in Chitipa to Lilongwe, the capital city of Malawi, for better medical attention.

“Before going to Partners in Hope Hospital in Lilongwe, I did not know that I had sickle cell disease,” he says.

Kayange holds a degree in social science from the University of Livingstonia. He says people living with sickle cell disease are “full-time human beings”, urging parents and guardians against locking them up.

“Don’t stop children from going to school just because they have sickle cell,” he says.

Kayange is the deputy board chairperson of Ensicef.

Dr Leo Zulu says the dream is big as the foundation focuses on raising public awareness; advocating for  quality health services, including treatment, care and support for persons with sickle cell; training on the neglected disease; and improvement of service facilities and resource mobilisation.

“It is estimated that each year, about 2 000 children are born with sickle cell disease… There is need to build support groups,” he says.

Dr Veronica Ng’oma, from Blantyre District Health Office, terms the formation of the foundation “a step in the right direction” to shine a light on the neglected health issue.

“We believe that this foundation will be a call for social and medical support for sickle cell patients,” she says.

And so, the first step in the life-changing journey has been taken.