A LUSAKA couple has proposed that the government makes deliberate efforts towards improving treatment and creating awareness about sickle cell disease.
Robert and Mwanza Chibilu are the parents of four children, two of whom are affected by the condition.
Commemorating World Sickle Cell Day, which falls today, the Chibilus say more effort should be extended towards creating hospital wards and training medical personnel specialised in handling sickle cell patients.
Sickle cell disease is an inherited genetic blood disorder.
“The government should therefore start considering helping sickle cell patients with lasting sickle cell disease treatment such as Bone Marrow Transplant (BMT) while the condition is in its early stages,” Robert said.
The couple stated that in Zambia, the SCD trait was 18 per cent in the general population and University Teaching Hospital in Lusaka had under its care over 1,500 SCD patients.
They say the burden of the disease on both the patients and caregivers in terms of the financial, medical and emotional demands could be huge.
“From the statistics gathered, it is clear that sickle cell disease is on the increase and if not checked now, will soon reach alarming levels that will eventually overwhelm the government/health sector in managing it,” Robert said.
Last month, their son Lukumo returned from India where he had been since late last year receiving specialised treatment for the condition.
Lukumo, 11 was diagnosed with sickle cell at the age of five. His sister Ntambo also has the condition.
He received bone marrow stem cells harvested from his younger sister Luusa at the Fortis Hospital in Gurugram, Haryana. The procedure was performed by a medical team led by Dr Vikas Dua.
Lukumo returned home last month and is recovering well.
“The tests are showing that he is on the mend and he is generally looking lively, stronger and more active. He looks more confident and ready to interact, ” Mwanza said.
“He’s had no pain episodes since the bone marrow transplant. He says he feels so strong now, but has to learn to live without pain which he lived with before and got so accustomed with.”
Mwanza added that she was unaware that she carried a sickle cell trait.
“It is a very difficult sickness as it affects the entire family. The sicklers are in excruciating pain with episodes of low haemoglobin count. I am affected but I never knew anything about sickle cell nor did I know that I had the trait,” she said.
“No single parent with a sickle cell trait can bear a child with sickle cell. The disease can only manifest in a child if both parents carry sickle cell genes or trait.”
The Chibilus said many lives were being lost to sickle cell today in Zambia because despite its prevalence in the country (especially in Northern, Luapula, North Western and Western regions), it often receives little attention and was believed to be incurable.
“Traditionally, it is believed that sickle cell anaemia patients never grow to adulthood and as such the disease should only be managed until the victim dies off. The belief is unfortunately also common among health practitioners.… The stigma associated with the disease causes victims and caregivers/parents to avoid coming out in the open and seeking treatment,” Robert said.
In 2018, the couple registered the LukumoNtambo Foundation to among other aims, create awareness and provide counseling about SCD.
“As a foundation, we would like to partner with the government, corporates, donors and individuals to create better outcomes for sickle cell patients in both urban and rural areas the same way much attention is given to Malaria, HIV and AIDS, etc,” Robert said.
And Mwanza disclosed that Dr Dua is currently in the country, and was scheduled to hold workshops at Arthur Davison Children’s Hospital in Ndola and Kitwe Teaching Hospital on Monday.
He will today be at UTH from 10-15 hours.
She called on Zambians to get tested for SCD.
“We need to know our genotypes. Sickle cell can be avoided. Let’s get tested today,” said Mwanza.
The United Nations General Assembly recognised sickle cell disease as a global public health concern in December 2008, and officially designated June 19 as World Sickle Cell Day.