Sickle cell anemia; Patients share their experiences
Yaa Attah moans silently in bed, as she experiences the pains that she has become used to for the past 32 years.
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Her husband lies by her side, but she is trying as much as possible not to wake him up.
They have been married for the past five years and her moaning and crying at night has been a usual occurrence.
In another location, little Bismark has been admitted to an intensive care unit (ICU) in a hospital and he lies there moaning with joint pains and other aches.
His parents have been by his side for the past five days, praying and crying that their little boy would be relieved of his pains.
What is common with Yaa Attah and Bismark is that they both have sickle cell anaemia.
What is sickle cell anaemia?
Sickle cell anaemia is an inherited, lifelong disease. People who have the disease are born with it. They inherit two genes for sickle haemoglobin—one from each parent.
There are several types of sickle cell disease. The most common are sickle cell anaemia (SS), sickle-haemoglobin C (SC), sickle beta-plus thalassemia and sickle beta-zero thalassemia.
People who inherit a sickle haemoglobin gene from one parent and a normal gene from the other parent have the sickle cell trait.
Having the sickle cell trait is different from having sickle cell anaemia. People who have sickle cell trait do not have the disease, but they can pass the sickle haemoglobin gene to their children.
If one parent has sickle cell anaemia (SS) and the other has normal (AA) blood, all of the children will have sickle cell trait. If one parent has sickle cell anaemia (SS) and the other has sickle cell trait (AS), there is a 50 per cent chance of having a baby out of every two, with either sickle cell disease or sickle cell trait with each pregnancy. When both parents have sickle cell trait (AS), they have a 25 per cent chance that is one out of every four babies would be born with sickle cell disease with each pregnancy.
Sickle cell has a prevalence rate of two per cent in the country. It is estimated that 10 to 14 per cent of the Ghanaian population carried the sickle cell gene.
Recently, the world marked the fifth Sickle Cell Day, on the theme, “Know your sickle cell status - Stop the stigmatisation.”
Most people in the country, according to the Sickle Cell Advocates (SICCA), Ghana, do not know their status, a situation which has been described as dangerous.
SICCA is a non-governmental organisation that provides care, education and support for people living with the sickle cell disease.
People’s Experiences
The assertion that most people do not know their status is confirmed by the story of Mr V. Tettey, who, although knowing his status as an AS, did not know that his wife was also an AS.
The result was that, they gave birth to three children, one of whom is now SS.
“I feel sad, when I see my little girl, who is 10 years, moan in pain,” he said.
What worsens his situation is that, his daughter, who has also become aware of her condition would ask in her pain, “mommy and daddy, why, why do you do this to me.” This he says breaks his heart.
They only got to know what they had done after the birth of their third child who became very sick.
According to him, no medication or treatment worked, so they were referred to the Korle Bu Teaching Hospital, where an extensive test showed that the child had sickle cell.
Since then, they visit the hospital not less than three times in a year when the child gets a crisis, which is termed so because of the excruciating pain that she goes through when her white blood cells become like the sickle, clogging at the joints, that is, her wrists and elbows impeding blood flow and swelling the area.
Another father, Mr K. Tsen, says he went into a union although he was fully aware that his wife was SS and he was AS.
“I do not believe that we should discriminate against people because they have sickle cell”, he said.
“I married my wife knowing the implication of what I was doing”.
Today, they have three children one of whom carries the sickle cell trait.
“I entered into that union because my wife made her status clear to me that she was SS and, therefore, she needs to get someone who was sickling negative,” he said.
He went together with her to the hospital to have a test done and he came out sickling negative and he married her.
According to him, it has not been an easy task taking care of his wife when she is in crises.
“The whole house feels her pain when the crisis begins. I then assume the role of a father and mother to our children for a period of at least one week, during the time when she is on admission at the hospital.”
A mother of three children, Ayebea says her third child, who is four years old and is SS, receives blood transfusions every six months.
According to her, all the experiences that people with the disease go through are different saying that some are more severe than others.
Cost involved in treatment
According to Mr Tettey, it has not been easy for him and the family as they have to spend a minimum of GH¢300 per admission on drugs alone.
Luckily, he says the National Health Insurance Scheme (NHIS) takes care of the admission charges and that helps to ease the burden a bit.
He is also lucky to have employers, who cater for his medical bills and dependents so he is able to seek a refund of all expenses.
However, he says it is not easy financing the treatment and wonders how people who cannot afford are able to cater for the cost of treatment when they go into crisis.
For Mr Tsen, “It has not been easy either”. According to him, he has been married to his wife for the past 27 years and there was not a single year that his wife did not have an attack.
His bills keep increasing as she is normally admitted between two to three weeks.
As a precautionary measure, he always has to ensure that she has a constant supply of folic acid and other essential drugs used in combating the condition.
Advice
Mr Tettey says with what he has gone through, he would advise that all would-be couples know their status before they marry.
For Mr Tsen, he says he took his decision on purpose. He did not want his wife, who was then his girlfriend to feel stigmatised.
“We all have different mental strengths. I knew I could handle it that is why I married my wife,” he said.
“I will ask people to weigh their resilience capabilities before they make such decisions,” he added.
*It is important for would-be couples to know their sickle cell status before they enter into marriage.
By Rebecca Quaicoe-Duho/Ghana
