By Beryl Okendo and Jeremiah Ongili.
Accessibility and affordability of sickle cell medication in syrup form suitable for children is a challenge in the management of blood disorders.
The medication available in most public facilities is designed for adults, forcing pediatricians to use medicine prescribed for adults with sickle cell to treat children with sickle cell.
“We do not have hydroxyurea in the hospital here, we send caregivers to buy from pharmacies out there, after which we portion and make syrup for the children,” Dr. Josephine Ojigo head Pediatrician at the Obama children’s hospital said.
Most sickle cell patients come from poor backgrounds and therefore cannot afford medication.
Availability of continuous sufficient blood for the Sicklers is also a setback in the management of sickle cell at Jaramogi Oginga Odinga Teaching and Referral Hospital (JOOTRH) which bears the highest burden of the disease in Kenya.
Due to the rapid dilapidation of red blood cells in patients with sickle cell, the patients are in frequent need of blood transfusion which sometimes becomes impossible when there is no blood in the hospital blood bank.
Malaria is also a common threat, especially among patients living with sickle cell in the lake region. Proper medication with anti-malaria drugs is vital to ensure the survival of patients. There is a need to also vaccinate our children against meningitis and pneumonia at an early age.
JOOTRH acquired a ‘Migele’ machine, one of its kind in Kenya, and launched a newborn screening for sickle cell. “We have done screening and for the last year found 6500 babies to have sickle cell.” Dr. Ojigo said.
The Obama hospital designated Tuesday to be the clinic day for children with sickle cell, their caregivers are taught and treatment is carried out where necessary.
JOOTRH has joined hands with other stakeholders to raise awareness of sickle cell. Some of the activities being carried out during this Sickle Cell awareness month include the screening of newborns for sickle cell, guidance, and counseling for parents and guardians of the newborns, and nutritional and medical advice to the parents.
The thyme of the month is Sickle Cell matters, in partnership with various organizations, JOOTRH has been putting their best foot forward in ensuring that awareness is created on the issue of Sickle Cell Disease and the public is equipped with the right information on the disease.
For so long sickle cell disease has been an issue of concern, especially in the lake region with the region having the most prevalent sickle cell cases in the nation. Therefore there has been a need to address the issues surrounding the disease and to put the right information into the public domain.
Sickle Cell is a red blood cell disorder that causes the red blood cells to mishappen leading to breakdown and dysfunction of the same. The disease is inherited and can be passed down from parents with sickle cell genotype to their children.
The detection of the disease among newborns cannot be done without screening because newborns at an early age do not display symptoms of the disease. There is therefore a need for newborns to be screened at an early age for early detection and commencement of treatment.
Mrs. Beatrice Ontita, a nurse in charge of Obama advised couples to go for genotype testing to establish whether they have the sickle traits and if they do, appropriate counseling and psychosocial support be given to them. This comes at a time when there are still a lot of uncertainties and misinformation about sickle among the public that needs to be addressed. Most people still believe that SCD is a curse resulting from a taboo or a mistake that one did. This mostly results in stigmatization of couples by their community or even sometimes between couples themselves leading to separation and single parenthood.
Sickle cell disease is manageable and one can survive and conquer the menace through proper treatment, diet, and hygiene.
The journey towards zero sickle cell disease is still ongoing. The public is therefore urged to bring their newborns for screening and early detection. Blood drives are also ongoing in various locations and we call upon the public to massively avail themselves and save a life.