Parents of children with Sickle cell disease plead for govt assistance

By Ijendu Iheaka 

Aba (Abia) June 22, 2024 

Parents of children with Sickle Cell Disease have pleaded with governments to assist them as costs of drugs and treatment have skyrocketed to avoid losing their children to the disease.

The parents spoke to our Correspondent at the sidelines of Vicar Hope Foundation's event to commemorate 2024 World Sickle Cell Day in Aba, Abia on Friday evening.

They pleaded for urgent help to save their children's lives because they can no longer keep them alive through their low income.

Mrs Ngozi Ogbonna said a false laboratory test result caused her to marry her husband who has AS gene like herself which has produced four children with two being SS.

She said managing two children with the sickle cell gene has become very expensive with the cost of things in Nigeria hence their need for government assistance.

Ogbonna said government should not leave the medical care of children with SCD to the parents of patients if they want such children to survive and be useful.

Another parent to a patient, Apostle Okechukwu Joseph said his second daughter who has SCD has been a source of huge expenses to the family.

"My experience with the doctors is that they are not doing the best that is required but the much they know so they need more specialized training.

"At FMC Umuahia, my child was left to student doctors who were using her for experiments, hospitals should do better.

"And government should consider the lives of these poor children with SCD and save them by assisting in their health care which cost has become unaffordable to many parents now", he said.

Ogechi Onyekachi whose twin boys have SCD said it has not been easy caring for them especially in this season of high cost of drugs and treatment.

She begged government to come to her aid and that of other poor families because taking care of SCD children has become a herculean task.

Dr Emeka Nwakamma, a Medical Consultant to VHF Hospital, earlier in his speech said that Sickle Cell Disease (SCD) patients could prolong their lives by avoiding painful crisis and infections.

He counseled Sickle Cell Disease (SCD) patients to drink plenty water, avoid getting too hot or too cold, hard exercises and exposure to low oxygen levels to escape painful crisis.

"Sickle Cell Disease (SCD) is a group of blood disorders inherited from a person’s parents the same way people get the color of their eyes, skin, and hair. 

"A person with SCD is born with it and it occurs when a person inherits 2 abnormal copies of hemoglobin gene, one from each parent. 

"The abnormal genes with sickle cell traits include hemoglobin SS, also called sickle cell anemia which is the most severe form of the disease, hemoglobin SC; S-beta thalassemia; hemoglobin SD and SE.

"Sickle Cell Trait (SCT), also called “carrier state” occurs when only 1 abnormal copy of the Hemoglobin gene is inherited, such as Hemoglobin AS", he said.

He said the persons with AS genes do not usually have the symptoms and signs of SCD but can transmit the gene to their children thereby propagating the disease condition.

Nwakamma said there is no single best treatment for all people with SCD as treatment options are different for each person depending on their symptoms.

He said SCD treatments include blood transfusions, drinking much water, intravenous fluid therapy and medications to reduce pain, prompt malaria and other infection treatments. 

The consultant said for severe SCD, a medicine called hydroxyurea might be recommended to reduce painful crisis and hospital stays.

He said another recommended treatment modality in the horizon is Gene therapy which is not everywhere now.