10% of Zimbabweans suffer ‘rare’ Sickle Cell Anaemia – survey; disease is one of the most dangerous inherited conditions 

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By James Muonwa l Mashonaland West Correspondent 

IN traditional African culture it is considered a taboo for one to reach the age of 37 without consummating a family of their own.

Families, and indeed communities, frown and begin to suggest theories as to why someone, either male or female, has at that milestone not entered into marriage, let alone have kids.

In most cases when this has happened, highly conservative and superstitious communities have pointed to witchcraft, a curse or some bad omen.

But for 37-year-old nurse, Molyn Chima her story of not having entered a marriage or achieving other milestones is not attributed to either witchcraft, a curse or bad luck.

At the tender age of nine, Chima was diagnosed with a condition known as Sickle Cell Anaemia (or Sickle Cell Disease) which prevented her from going to school for two months. Thereafter, she endured stigma and discrimination as her peers associated the illness with HIV and AIDS. She then had a different world’s view.

“I hate my childhood, l have terrible memories of it. Imagine during break-time other kids would gather in a circle and start sharing food while l tucked myself alone in a corner. They excluded me because they suspected l regularly missed school, at one time for two months, presumably l had HIV and AIDS,” said Chima.

Confiding in, Chima said she remains single up to this day for fear of marrying into a family in which in-laws might misunderstand her and subject her to further discrimination and name-calling.

Sickle cell condition is group of disorders that cause red blood cells to become awkwardly-shaped and eventually break down. With this inherited group of maladies, red blood cells contort into a sickle shape. The cells die early, leaving a shortage of healthy red blood cells, and can block blood flow causing pain referred to as “sickle cell crisis.” A crisis usually manifests in high altitudes, either low or high temperatures.

According to the John’s Hopkins Medicine Journal, the condition is marked by defective hemoglobin which inhibits the ability of hemoglobin in red blood cells to carry oxygen. Sickle cells tend to stick together, blocking small blood vessels causing extremely painful and damaging complications.

The anaemia pre-exposes one to chances of suffering a stroke or heart attack. Patients suffer recurrent pricking pain or burning sensation in joints, back and any other body parts.

Chima, who is now a nurse at Parirenyatwa Group of Hospitals in Harare, told journalists in Chinhoyi during a National AIDS Council (NAC)-organised workshop last week, that she founded Sickle Cell Anaemia Trust of Zimbabwe (SCATZ) in 2017 to raise awareness of the disease, described as “rare” due to lack of knowledge among African populations, which bear the brunt of the affliction.

“I am the founder and executive director of SCATZ which l started inorder to raise awareness of the condition which is described as ‘rare’ but occurring in most people, particularly in Africa.

“In Zimbabwe, sickle cell studies have not been done yet, but after realising the large numbers of sickle cell patients reporting to hospitals in Mashonaland Central province and Mutoko, SCATZ partnered with local laboratories and have been doing free sickle cell screening for every child that enters Bindura Hospital,” Chima said.

The results from Mashonaland Central and East provinces, have indicated that two out of every five children test positive for sickle cell anaemia.

“This has caused us to believe that at least 10% of the Zimbabwean population is living with sickle cell anaemia,” said the SCATZ founding executive director.

She said the World Health Organisation (WHO) declared the condition as the most dangerous inherited diseases in the world, with 75% of patients resident in Africa. More than 100 000 sickle cell anaemia patients are born every year and 75 % of these children die before the age of five due to related complications.

“In the region, the majority of children with the most severe form of the disease die before the age of five, usually from an infection or severe blood loss.

“In countries such as Cameroon, Republic of Congo, Gabon and Nigeria the prevalence rate is between 20% to 30% while in some parts of Uganda it is as high as 45%.”

Besides building public awareness and knowledge among key stakeholders, Chima said SCATZ is advocating for the provision of quality palliative care for patients in the country.

“We shall further focus on advocacy for policy and practice review to support specialised care for sickle cell patients in Zimbabwe,” Chima said.

Although the condition does not have a cure with a few resorting to blood transfusions and bone marrow transplants in cases of crises, SCATZ says it is committed to collaborations inorder to find a panacea to end the disease, which has forced some African countries to stop couples with genetic traces of the condition from marrying each other.

Illustrating how costly managing sickle cell anaemia can be, Chima said she requires between US$45 and US$60 to buy painkillers and other sedatives each month, a need many struggling Zimbabweans cannot afford.

She reiterated the need to legislate or establish policy to screen for sickle cell anaemia for everyone who walks into a primary health facility, just like it is done for other diseases such as tuberculosis, HIV and cancer.

Sufferers of sickle cell are a vulnerable population and require full multi-stakeholder support inorder to thrive, she added.

“In a nation where the number of new infections of HIV is still significant, there is a strong possibility of a sickle cell anaemia patient being infected with HIV and, if treatment is not cognisant of the presence of SCD, there is a very high risk to the patient,” warned Chima.

In this vein, SCATZ opened its first Sickle Anaemia Clinic housed within Bindura Provincial Hospital offering screening, information, medication and after-care support.

Chima said the condition is causing “silent havoc” in communities and appealed to the media to play its educative role to raise awareness.

“Zimbabwe is recording more sickle cell cases, albeit without deliberate diagnostics and tests carried out on patient observation. Though the condition is documented as rare globally, it is a complex and permanent condition that is genetically inherited and whose life-threatening effects can only be managed through early correct diagnosis and specialised care thereafter. I am appealing to journalists to tell the story and make a difference” she said.

NAC communications director, Medeline Dube proposed screening for sickle cell to be introduced and challenged the Ministry of Health and Child Care to look into the matter.