Imagine being in pain every day of your life. Your knees hurt, you feel sharp pains in your elbow and your entire body is in constant pain.
To complicate your woes, you often have low energy because your red blood cells have broken down.
Well, this is the everyday experience of people living with sickle cell condition.
As the World celebrates Sickle Cell Awareness Day, I spent time with a carrier of this deadly disease, thirty seven-year old, Kwaku Kwarteng Yeboah.
The term sickle cell describes a group of inherited red blood cell disorders. People with sickle cell have abnormal hemoglobin, called hemoglobin S or sickle hemoglobin, in their red blood cells.
Hemoglobin is a protein in red blood cells that carries oxygen throughout the body.
People who have sickle cell inherit two abnormal hemoglobin genes, one from each parent. In all forms of sickle cell, at least one of the two abnormal genes causes a person’s body to make hemoglobin S. When a person has two hemoglobin S genes, Hemoglobin SS, the disease is called sickle cell anemia. This is the most common and often most severe kind of sickel cell.
I met Kwaku and his mother, also a carrier, on a rainy afternoon at their condition awareness center at Sakumono, a suburb of Accra.
Although he had a smile on his face I could tell he was in pain.
“For those of us who carry both sickling genes, we have bone problems and rheumatism. Any time it rains, life becomes unbearable, and we notice that our knees hurt all the time,” Kwaku lamented.
He added that gradually the body becomes used to the excruciating pain.
“There is constant pain in your body every time, but your body become used to it. We also have our cells breaking down all the time, our urine is yellowish and our eyes are a bit colored too. It’s never easy,” added Kwaku.
Kwaku said that for as long as he could remember, he has always been on medication, with regular trips to the hospital.
He believes sickle cell carriers never get the needed attention at public institutions.
Schooling according Kwaku becomes difficult in such circumstances because they are made to endure same punishment just like an average human being.
“We are group of humans just like everyone else. We are punished like the rest, made to weed like the rest with no exceptions. But the health sector is equally worse, we get to the hospital and we are made to join the queue like everyone else. They forget that our time ticks faster than the ordinary person. We got to the hospital with my elder sister and it was the same story. Her time got ticked away and she died. She was my elder sister and she just died from a pneumonia infection which was not given the needed attention.”
In Ghana, 25 percent of the population has sickle cell and two percent of all babies born in a year also have sickle cell.
I’m talking about an estimated 15,000 babies each year. (I’ll say it this way, the below sounds too statistical – people tune off with hard statistics)
But contrary to earlier literature which suggested that persons born with sickle cell don’t live beyond ages 16, 25 or 30, some are actually still counting their ages; like thirty seven year old Kwaku who is now married with a son.
“Marriage is a huge deal when you have sickle cell, you always have to look for someone you are compatible with. Sometimes you meet a beautiful girl you would like to marry and she also turns out to have the gene. It’s really difficult. But I met a beautiful girl who loved me and was not a carrier. Her name is Loretta. Today we have a son, also a Kwaku but because of me, he is a carrier,” he said.
Although Kwaku bears no grudges against anyone for his predicament, he insists that there are mistakes some carriers must never make.
“The pain I go through every day is unbearable. I don’t think it’s fair for people to say they are in love so they got married even though they are both carriers of sickle cell. Who will do that to his or her child? It’s not godly. Personally I think its evil. You can’t cause a child so much pain because of love.”
But Kwaku’s mother, Charlotte Owusu however, blames herself and her husband for the family’s health challenges.
Though a carrier, Charlotte said she was not aware of their status at the time of their marriage.
The obvious emotional and financial stress took a toll on the family; they couldn’t handle it, and eventually contributed to their painful divorce.
“It was at Korle Bu Teaching Hospital that I was told my first born the girl had sickle cell and I asked what sickle cell was. I was then eight month pregnant with my son. I was so naïve. I went home to tell my husband and he knew he was a carrier. What was I to do? I was just 23. I was scared and very angry but the marriage did not even work. He wanted to have health children and he went ahead to have children but I was stuck with this children. I had to take care of two children with sickle cell,” Charlotte added.
But she did not give up. Together with her strong-hearted son, Charlotte has set up a not-for-profit organization; “Sickle Cell Condition Advocates” which creates awareness about sickle cell.
“We are interested in the condition of children with sickle cell. We are also interested in creating awareness. We do a lot of counseling too, especially for young mothers who are overwhelmed with the situation. We have done a lot in the three regions of the north. We have also signed a MoU with the ministry of health. But our next project is targeted at young children. We need to get every child tested so they know their status. It hasn’t been easy but my son is my strength and this is a fight we intend to win,” she added.
Though a silent-killer, many people take for granted their status in the choice of a marriage partner.
Only a few people care to test after the wedding bells have started ringing.
It might sound scary and insurmountable but Sudha Rao; a specialist pediatrician at the Pediatric Sickle Cell Clinic at the Korle Bu Teaching Hospital here in Accra, assures me, continuous public education and awareness is the most important key.
“Sickle cell is one of the most common blood disorders which are very common in our part of the world. It’s caused by the abnormal shape of the red blood cell. The normal cells are doughnut shape and the advantage is that they can squeeze themselves through the blood vessels. But this is not the same for the sickle cells which are deformed. This can end up causing stroke because the human brain needs blood and when it doesn’t get it, it stops functioning.”
“As doctors we don’t encourage carriers of the sickle gene to get married and reproduce because there is a fifty percent chance the child will be a carrier too. Now we are advocating for policies to be put in place that will ensure that every child is tested at birth. This is not currently in place. We have random testing and so many reasons given why the testing cannot be done. But when we are able to test the child at birth, then we can start early treatment and give those children more fighting chance,” the doctor added.
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(Via: CitiFM Online Ghana)
