Sickle Cell Disease is an inherited condition that affects the red blood cells in people’s bodies. Normally, red blood cells (RBCs) transport oxygen throughout the body, which is essential to the way our bodies work.
It is a major but widely neglected, public health disease in low-income countries. In Kenya, the disease is a ‘silent’ problem with devastating effects in many parts of Kenya. According to Sickle Cell Anaemia foundation Kenya Chairman Nick Orbido, In Kenya, around 1000 people are born with sickle cell anaemia annually, with lots of misconceptions and myths surrounding the disease
‘’In Kenya, we have a lot of misconceptions myths about sickle cell because our family was shunned with relatives as you can see now I’m kind of slim and our family we were very slim and we used to look very feeble and it reached a point most people thought we were living with HIV and we had to shift schools’’ Orbidi tells us in an exclusive interview.
It was this treatment that made Orbido and his relatives join heads to form the Sickle Cell anemia foundation in 2008. Orbido who is not living with sickle cell has however faced the challenge of having a sibling living with sickle cell and often than many times tried to secure treatment and information about the disease to no avail
‘Most times my sister was treated to malaria by then it was the early 90s,I remember when I was in form 1 we were really close with my sister we tried to find information about sickle cell but we couldn’t we went to the national library in Mombasa we got one particular book it didn’t have information and we tried to find out if there’s something been done about sickle cell by the government is there something been done by the private side and we couldn’t find anything and what we did is form a support group with some of my cousins and formed sickle cell anaemia foundation’’
According to research by the Lancet Global Health, In Africa, 50–90% of children born with sickle cell disease die before they reach their fifth birthday. It is also observed that High school dropout rates have been observed among those diagnosed with the disease often due to prolonged ill-health. In countries where comprehensive care is available, many people with Sickle cell disease live normal lives in their 40s or 50s or longer than this.
A statistic, Orbido says should be managed by taking up early detection either by knowing your genotype or genetic counseling for couples yet to bear children.
‘’Try to find genotype compatibility first you need to screen yourself and know what you are getting to, it’s upon you to make an informed decision’’
He however decries of the high cost of screening that shuns most people away
‘’Screening for persons living with sickle cell is very expensive, If you want to know genotype it will cost Kshs 8000 to Kshs 12,000($80-$120) to know whether you are a carrier or living with sickle cell’’
However, the silver lining for screening patients living with sickle cell anemia could be technology
‘’ Right now technology has changed we have a point of care screening which you can buy one at 1500($!5) a kit to test for yourself and it will show whether you are carrier it’s not a one-off test it’s like HIV, after that you have to do a confirmatory test’’
As the world deals with a pandemic, one would wonder how sickle cell patients are accessing healthcare and according to statistics produced by the Ministry Of Health in early September luckily, no patient has contracted the disease, which Sickle cell anaemia foundation (SCAF-Kenya) Founder says it’s a blessing in a disguise seeing as the challenges the patients have faced in accessing medication during curfew hours that was implemented by the government to curb COVID.
September the world celebrates sickle cell anemia awareness month, and Orbido says more awareness needs to be done on sickle cell and there needs to be more government policy on how to deal with patients living with sickle cell
Currently, Kenya is in the process of launching a sickle cell awareness guideline that will guide communities and patients on how to live with sickle cell. Kenya will be the third country after Tanzania and Nigeria to launch the guideline