Parents of children and wards living with sickle cell (SS) anaemia have been urged to focus on seeking appropriate ways to manage the crises instead of dwelling negatively on the disorder.

Hajiya Fatima Buhari, daughter of president Mohammadu Buhari gave this advice while sharing her experience on sickle cell.
Speaking at the ‘Closing the gap in sickle cell disease’ fund raising event, held recently in Lagos, Hajiya Buhari, stated that from experience, having lost a sibling to the disorder, and also caring for three children who are sufferers, people should desist from stigmatising and pitying, rather, it is better to encourage them instead of pitying.
Over the years, Hajiya Buhari has been a strong advocate for sickle cell research to ensure getting the needed care for the people who suffer from the disease.
She noted that ‘warriors’ as she’d rather refer to sufferers, can sometimes be stubborn, especially when it comes to taking their drugs. Caregivers should try to encourage them on the need to regularly take these drugs for their wellbeing.
“Try to encourage these warriors when they come to you or you come across them instead of stigmatising or pitying them. My experience with my children shows that they can be stubborn especially when it comes to taking drugs.
“You also must teach and encourage them to care for themselves always as you might not always be there for them.”
Because caring for a child with SS can be overwhelming and sometimes exhausting, the daughter of the president adviced parents and other caregivers to speak with counsellors and specialist on how to de-stress and activate living mechanisms.
She also  called for a merger between government and credible NGOs for research, effective management, adding that the government cannot and shouldn’t be left alone in battling this disease.
Also speaking at the event, Professor Olu Akinyanju, founder of the Federation of Sickle Cell Clubs of Nigeria, stated that in the past, most people born with sickle cell anemia (HbSS) did not live long. However, research has improved understanding of this disorder, allowing affected people the opportunity of living better health lives.
Prof. Akinyanju noted that apart from medications, maintaining a healthy body mass index and right nutrition also play a role in extending the life span sufferers.
Nigeria is tagged as the sickle cell capital of the world, and is also the top sickle cell endemic in Africa, with an annual infant death of about 160,000, representing more than eight percent of infant mortality in the country.
Sickle cell mostly affects people of African descent with a ratio of one in 1000. It also affects people of Hispanic descent too.