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Addressing the plight of children living with sickle cell disease

Nyanza residents are renowned for holding high family values and parents always strive to raise healthy and successful children.

However, a serial silent killer lurks in the community ravaging young souls. Sickle Cell Disease (SCD) is a health concern all over the world and to sensitize people on this disease, the month of September was marked a National Sickle Cell Awareness.

Theresa Atieno Odero, the founder of Homa Bay Warriors in conjunction with Ampath Team in a bid to raise sickle cell awareness. Photo by Isaiah Onuko

The disease is one of a group of inherited red blood cell disorders that occur when a child acquires two sickle cell genes each from both parents.

The birth of a child is a thrill to the parents. Further, it’s a feeling of accomplishment to the parents when the child grows up, transforms and becomes that prominent person the parents always desired and dreamt about.

Regrettably, certain conditions and diseases can be a stumbling block to this dream. Individuals who go through this condition suffer many complications such as menacing sickle cell crisis, stroke, amnesia and weak immunity among others.

In some cases, parties who carry the SCD gene have to sacrifice love for the sake of the health of their future babies.

In a conversation with KNA, Consultant Pediatrician and in-charge of sickle cell disease in Homa Bay Referral Hospital Dr. Meshack Liru reveals that Homa Bay County has a prevalence rate of SCD of about 2 per cent of the population. Dr. Liru discloses that the majority are carriers and they do not show any symptoms and easily end up indulging in marriage with a partner who unfortunately happens to also be a carrier, which contributes to the surging numbers.

The pediatrician cautioned that the sad reality for such a couple is that for every pregnancy there is a 25 per cent chance of bearing a sickling child, 25 per cent normal and 50 per cent chance of being a carrier.

He says apparently, the majority of patients are initially misdiagnosed and treated for other ailments and not SCD, which causes many sickle cell disease children to succumb before they reach five years.

The medic explains that SCD virtually affects every part of the body, which renders immunity system weak making one vulnerable to infections.

He said a day hardly passes without the hospital admitting a child going through sickle cell crises pain.

Dr. Liru sadly narrates a story of a family in Kabwoch in Homa Bay County, where out of six siblings, five succumbed to the disease.

The locals strongly believed they were bewitched and eventually the husband abandoned the family believing the wife was the problem.

The pediatrician expresses concern that people lack awareness concerning the disease due to the stigma attached to it, which makes them shy to discuss its reality.

“Unfortunately, only a few individuals who face health complications show up for sickle cell tests, but the ideal situation should be people to voluntarily seek tests before marriage just like HIV,” says Liru.

“Love is treasured by everyone, but bringing forth a child with sickle cell disease can place your relationship in huge distress and the well-being of your future child would be compromised,” he says.

Ideally, babies do not have to suffer the consequence of their parents’ choices. Liru says it’s unfortunate that some parties ignore genotype tests and end discovering their incompatibility later after they have given birth to a sickle cell kid.

He noted that some aspect of African culture also contributes immensely to the increasing number of children with the disease for instance gender preference in children, sometimes leading to more births, even in families grappling with genetic disorders.

In an interview with KNA in Homa Bay town, 30-year-old Theresa Atieno Odero revealed that she has lived with the condition since her birth.

Her predicament has prompted her to form a foundation dubbed, Homa Bay Sickle Cell Warrior Support Group where they sensitize patients on the management of the condition.

According to Odero, the society has a lot of misconception and beliefs surrounding the disease and that people tend to think that sickle cell disease is a mere chronic disease and curse.

“The afflicted opts to seek medication for the disease from witchdoctors who offer concoctions as a remedy,” she added.

Odero says the local communities sometimes become hostile to people living with the disease because they do not understand them. They are perceived as people who are lazy at work place or in schools.

Owing to the condition they cannot fully contribute to the activities of the society; hence they find themselves as social misfits.

Odero says families strain to meet financial expenditure on medication, which include frequent laboratory test, check-ups, daily dose and other expensive drugs. Actually, their lives revolve around regular hospital visits.

“Most sickle cell patients are anemic hence require regular blood transfusion which may result in iron overload. The drugs used to tame this condition are quite expensive and sometimes are not readily available,” she said.

Odero notes that management of the disease pushes poor families into a dilemma, where they have to sacrifice the child’s education in favor of his/her health.

From her experience, it is clear that the community does not embrace people who are ailing from this disease since even the ones who have attained high academic qualifications still find it hard to secure a job.

This is because most employers fear that their condition would make them unproductive due to regular illness.

Odera remarks that sickle cell disease is rampant in the Nyanza region and it is unfortunate that only a few parties have come out to help fight this disease.

She states that through their support system, they have managed to rally the victims of the disease and they have taught them basics on the management of the disease and nursing sickle cell wounds.

The sickle cell warrior reveals that sickle cell pain is extremely excruciating and she urged the government to procure enough medication in the hospitals.

She states that ‘people living with this condition should not be defined by their condition and no one has the right to judge the victims that they will not live for more than 18 years.’

She added that God is the provider of life and parents should support their ailing children just like other normal kids so that they can equally be resourceful in future.

Scientifically sickle cell disease in children is avoided by noting that the genotypes in humans are AA, AS, AC.

Persons with AA genotype are a perfect match for individuals with AA genotype as those couples save their future children from the worry about genotype compatibility.

If AA genotype individual pairs with an AS genotype, they will sire kids with either AA or AS which is good but in rare situations all the kids may be AS which limits their choice of a partner according to a report by the American University of Nigeria.

Therefore, it is advisable that AS and AS should not marry because there is a chance of having a child with SS while AS and SS should not even think of marrying.

On the other hand, SS genotype and SS must never marry since there is no chance of escaping having a child with sickle cell disease.

Raising a baby who is suffering from anemia comes with a lot of challenges because such kids need special attention since they fall sick easily at any time.

The sickling child also feels stigmatized socially withdrawn as they cannot play like other kids due to their poor health.

This condition predisposes families into emotional turmoil as they fear losing their children.

According to the world Health Organization (WHO) sickle cell disease contributes to 6.4 per cent of the under-five mortality rate.

A lot of research has been conducted to help alleviate this disease but only a little progress has materialized.

Research done by the University of America revealed that the only way to alter genotype is through a bone marrow transplant. It has been confirmed to be the only capable permanent cure to SS, SC, and CC; however, it is a recent discovery.

Unfortunately, it is a very expensive procedure and cannot be done in any part of Africa and it also comes with some risks.

With all the challenges that come with sickle cell disease, Dr. Liru advises that it is very important to know your genotype before you accept that handsome guy or to that beautiful lady whom you desire to spend the rest of your life with, or maybe if you are in a relationship in which parties are planning to conceive a child.

By Isaiah Onuko and Davis Langat 

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