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World Sickle Cell Day: Group offers free genotype screening



As the world remembers those living with Sickle Cell disease, a foundation- Olive Sickle Cell Initiative (OSCI) recently marked this year’s World Sickle Cell Day(WSCD) by offering free genotype screening, confirmation and counseling to Anambra residents.

 Although the World Health Organization theme for WSCD 2020 was ‘Shining the light on the Sickle Cell disease,’ OSCI themed it “Living beyond the Pains”.

 The non-governmental organisation which was born out of deep concern to campaign for support of those living with Sickle Cell Disorder (SCD) with their families and to discourage intending incompatible couples from marriage or procreation also called on government at all levels to float a special Health Insurance Scheme for the patients-‘sicklers’.

 According to the founder/president, Nonso Stanley Anene “Our focus is towards reducing sickle cell scourge in Nigeria through providing education, awareness, advocacy; philanthropy, psychological counseling and community engagement activities.

  He said that the foundation chose their theme because there was need to identify with the physical and psychological pains of the families with persons living with the disorder.

   “Apart from physical pains, a sickler undergoes, the consciousness that he can die soon is overwhelming. Likewise, the parents keep living with the guilt that they are cause of the problem. To avoid these pains, let everyone join in the campaign to stop incompatible couples from getting married or procreation. That is what WSCD is all about.

  “It is worrisome that Nigeria makes up more than half of the total number of sicklers in the whole world. The causes include ignorance, stupidity or selfishness of the incompatible couples who because they will not be directly affected go ahead to marry blinded with infactuation or an erroneous belief that God may not allow them give birth to a sickler.

  “There is need for confirmation of genotype in a standard government approved health facility. False lab report could be caused by improper preservation of reagents due to epileptic power supply or faulty apparatus which a private Lab technician may not be willing to replace readily”, said Anene.

  Moreover, the OSCI Director of Media and Awareness, Ebuka Onuorah said that the foundation has established SCD clubs in secondary schools to educate the youths who may want to get into serious relationship after their secondary education on the need to know their genotype.

  “We reach out to young people at schools and social media platforms. We tell people who are victims of SCD to speak up about their pains, broken marriages, loss of loved relatives, loss of lucrative jobs due incessant health crises”, said Onuorah.

  Also, Onyinye Chukwu, the OSCI Director of Advocacy said that apart from during WSCD celebration, the foundation do reach out to community stakeholders like traditional rulers, town union leaders, clergymen on the need to educate intending couples or even those just dating on the need to ascertain their genotype and stop the scourge.

  “Only 5 percent of sicklers live up to the age of adulthood in Nigeria. Community. Leaders should make law prohibiting incompatible couples from marriage. Priests should also compel their members early enough before wedding preparations to go for genotype test at a standard laboratory to avoid sympathy marriage which will end up in regrets.” said Chukwu.

  However, the foundation pleaded with both federal and state governments to float full or partial health insurance scheme and provide permanent employment for sicklers, saying that it was not their fault to be born that way.

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