By Mufuh Ramiro
Sickle Cell Anaemia (SCA) is a heritable genetic and sometimes fatal disease that causes red blood cell disorder. The red blood cell loses its ability to change to forms suitable to navigate narrow spaces, resulting in shortage of oxygen to affected areas. SCA is common in malaria endemic areas like Sub-Saharan Africa, Middle East and the Caribbean.
American Journal of Human Genetics, traced SCA as far back as 7,300 years, and found out that it started with just one child born in the Sahara Desert with heightened immunity to malaria resulting from the sickle trait. Unfortunately, people who inherit the gene from both parents who are carriers (immune) do not have protection against malaria.
National Center for Biomedical Information (NCBI) reports that about 50% to 80% of babies born with Sickle Cell Disease (SCD) in Africa die before the age of 5.
Jerome Neba, 32, lives with sickle cell anaemia and tells me how he has had to grapple with the condition. “It was challenging to me when I was told that I have sickle cell. I thought it was the end of my life. But in the long run, God gave me the strength to accept who I am. Because of this, I have been able to move along,” he says.
“My hemoglobin sometimes went down to 3g/dl, but I did not die. Normally, one can die from hemoglobin of 5g/dl or less,” revealed Jerome.
Jerome is an Advanced Level student and to become a medical doctor in the future. He has been struggling to manage the sickle crisis with academics.
“Sicklers can become anything they desire. I am a student and run a small business to sustain life since I live alone. Though it’s not easy, once you know who you are and take your medication seriously, you’ll do better,” says Jerome.
Jerome adds with a bold smile over his face that “The most painful part of my life is when I am in a health crisis. I usually have severe pain around my chest and ankle, but it’s already part of me. As we speak, I am in crisis, but if I don’t tell you, you won’t know.”
In April 2016, the CBC Health Services created a Sickle Cell Clinic at Nkwen Baptist Health Center to cater for children with SCD. The clinic started with 15 children living with sickle cell. Presently, the clinic cares for at least 62 sickle cell children monthly.
It was with the spirit of the progress made by CBC Health Services that the organisation joined the global community to celebrate World Sickle Cell Day last June 30, 2018 at Nkwen Baptist Health Center under the theme “SCD: Walk For Hope.” The day was designated by the UN in 2008, to raise awareness on how to prevent and better manage the Sickle Cell Disease.
The burden of Sickle Cell Anaemia is borne by the entire family. Yvonne Tia is a mother of a 6-year-old girl who has been benefiting from the services of the Sickle Cell Clinic at Nkwen Baptist Health Center. She tells us her experience with her sickle daughter.
“When she is in crisis if not severe, I give her enough water, give her pain medicine, and check her eyes to see if her blood level is low. If the crisis is severe, I rush her to the hospital, Yvonne says.
“My daughter has had stroke two times. Her last stroke was in September 2017. Because of the stroke, she couldn’t walk or speak. Thank God for Nkwen Baptist Health Center and Mbingo Baptist Hospital she can walk now though she is still not able to talk,” explained Yvonne.
Dr. Mafor Nchungong of Nkwen Baptist Health Center says a couple with a hemoglobin SS (Sickle Hemoglobin) can only have sicklers (SS), those with AS-AS (Carriers) match have a 25% chance of having a sickler (SS), a 50% chance of having a carrier (AS), and a 25% chance of having a child with normal hemoglobin (AA). A match of AA and AS will have carriers of the sickle cell trait and children with normal hemoglobin. The best match she advises is AA.
“There is presently no treatment for sickle cell disease in our setting. We can only manage the symptoms, delay complications, and help patient live a better quality of life.
“Parents should always keep their children hydrated with enough water, give them food and fruits with high nutritive content, vegetables, and take their daily folic acid supplements to sustain their hemoglobin. This enables them live longer,” advised Dr. Nchungong.
Coordinator for the Non Communicable Disease Clinic at Nkwen Baptist Health Center, Cordelia Neba also advises for sickle cell patients to visit the hospital at least once a month for hemoglobin and other checks.
“Unfortunately, some parents wait for a crisis to become severe before rushing to the hospital,” says Cordelia.
The Clinic insists on pre-marital testing, to identify and seek to avoid cases that may result in couples giving birth to children with Sickle Cell Anaemia.