Sickle Cell Expert says disease is not a death sentence

Sule made this clarification on Monday in Lokoja at the inauguration of an NGO, SAMVIC Eneche Health Trust Fund.

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Dr Samson Sule, a Consultant Paediatrician, at the Federal Medical Centre (FMC), Lokoja, says sickle-cell disease (SCD),the foremost genetic disease is not a dead sentence.

Sule made this clarification on Monday in Lokoja at the inauguration of an NGO, SAMVIC Eneche Health Trust Fund; a project of Sickle-Cell Anaemia Intervention.

According to him, sickle-cell is an inheritable, genetic and fatal disease which causes red blood cell disorders, classified as sickle cell anemia and which may lead to death, if not properly managed.

He said: “Sickle cell disease (SCD) is not the end of life and not a dead sentence, if properly managed with adequate knowledge and support the patient will survive”.

The consultant, who delivered a special lecture on sickle-cell anaemia, also said adequate management could prevent patients from having frequent crisis.

“Once you have ‘S’ gene in your blood, you are a carrier of the sickle cell but not the disease itself; all the same, you must be careful in selecting your life partner."

“The SS genotype is due to the abnormal formation of sickle-shape cell, instead of the normal disc shape of the blood cells, ’’ he said.

He, therefore, advised parents to know their status and encourage their children to do same, saying “the easiest way out of the disease is ‘prevention’.

“For parents who delivered sickle cell children; it is not the end of life, it can be managed through drugs, taking enough water, regular check-up, prompt treatment of injury."

‘’Sickle cell patients should also avoid drug abuse, indulging in traditional practices such as tribal mark, incision and circumcision,” Sule said.

In his remarks, the Director, of the Trust Fund, Mr Maxwell Eneche, said the initiative would be implemented through Total Child Care Initiative, to coordinate interventions relating to the prevention of sickle cell disease.

He said the NGO intended to support primary prevention through awareness and counseling, screening, clinical support, capacity building in human resources and improve quality of life of patients.

According to him, the NGO will also collaborate with other organisations and individuals to reduce the effects of the disorder through awareness, advocacy and support.

He said the trust fund was established in memory of two siblings: Samuel and Victor Eneche, who died of sickle-cell anaemia.

“The Trust Fund will keep their memories alive through humanitarian contributions to the lives of vulnerable children who are not the cause of their health crises."

“Our vision is to have a Nigeria free of SCD by 2040 and a mission to provide support for sickle cell patients in Nigeria, through Advocacy,” Eneche said. 

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