The sweetness of love becomes even greater when you know that your feelings for your partner are in harmony, your intentions are the same, your aspirations and dreams of building a happy, peaceful and healthy family are also shared.
It is midday, and the sun is not too hot. In front of us stand two young people, a woman and a man, who have arrived together here at the grounds of Kiwangwa Health Centre.
An event is taking place, with members of the public turning up to receive education and undergo preliminary genetic screening for Sickle Cell Disease, organised by the Sickle Cell Patients Community of Tanzania [SCDPCT].
SCDPCT organised the event in collaboration with the Office of the Coast Regional Medical Officer, Chalinze District Council and various stakeholders working on Sickle Cell Disease and social development issues.
As they are received by SCDPCT medical officers present at the venue, they introduce themselves together: “We are engaged.”
A moment later, a voice calls out to me, “Sister Vero, come closer here.” I recognise the voice as that of Medical Officer Julius Joseph. I quickly move closer.
Julius adds, “These young people are engaged. They have come for education and to have their status checked.” He says this sentence with excitement.
WHY?
I clearly understood where this excitement came from. In several community health screening activities we have attended, we had never before met young people who openly told us that they were engaged.
Julius also lives with Sickle Cell Disease, so he understands in depth the various challenges that a person living with Sickle Cell Disease faces almost every day.
Another reality is supported by scientific evidence: if a man and woman who carry the Sickle Cell gene decide to live together and have children, there is a significant possibility of passing the condition on to their child or children.
Therefore, the step taken by these two engaged young people is important and fundamental in helping prevent a family from having a child with a high possibility of being born with Sickle Cell Disease.
I congratulate them, then step aside to give Julius room to educate them and conduct the screening they had requested.
He asks them, “Do you know what Sickle Cell Disease is?” Together, they answer, “No.”
The education begins here. They are taught about Sickle Cell Disease. Julius explains to them, “Sickle Cell Disease is not a contagious disease.
“A child is born with it by inheriting disease-causing genes from both the father and the mother, who themselves are carriers of those genes in their bodies.”
Gloria emphasises, “A person with one Sickle Cell gene is not a patient; they are simply a carrier. For example, I carry the gene, but I am not sick.
“A person who carries the Sickle Cell gene does not show any symptoms, while a person with the disease is the one who develops symptoms and becomes sick repeatedly.”
The lesson sinks in. Shortly afterwards, I watch as the medical officers open the papers and take out the ‘Sickle Scan’ test kits.
Julius tests one of them while Gloria Mubyazi tests the other. After only a few minutes, their results are ready. The two engaged young people are fine, and I also see smiles on their faces.
THE REALITY ...
Coast Region has a total of 5,423 patients with Sickle Cell Disease, of whom 1,300 live within Bagamoyo District Council.
Chalinze District Council follows, with a total of 399 patients, according to data from the Office of the Coast Regional Medical Officer.
The Regional Coordinator for Non-Communicable Diseases, Dr Eligreater Mzava, says that one of the challenges that remains visible is the community’s limited understanding of the disease.
“There are still people who do not know their status. Even among those who have children with the disease, some, due to limited understanding, do not bring them to hospital early.
“Many believe it is caused by witchcraft and therefore delay seeking treatment at health facilities. But it is not caused by witchcraft; it is inherited genetically,” she says.
Coast Region is among the regions with a high number of people living with Sickle Cell Disease in Tanzania.
“Every year, about 14,000 children are born with Sickle Cell Disease in Tanzania. This figure places the country third in Africa and fourth in the world in terms of the number of people living with the disease.”
The Ministry of Health Sickle Cell Coordinator, Dr Asteria Mpoto, says this and adds, “For that reason, Tanzania will not remain silent. We are working with various stakeholders to reach communities.
“That is why we have come here to Kiwangwa today. These are efforts to ensure that education reaches the community and early screening is carried out.
“We encourage young people to know their status because doing so greatly helps to break the cycle of having a child or children with Sickle Cell Disease.”
“Sickle Cell Disease remains a major problem. We will not stop providing education in collaboration with various stakeholders,” Dr Asteria emphasises.
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WE DID NOT KNOW
Now I learn that the engaged couple who came here are Yusuph Isack and Loveness Elia. In our special interview, they say that previously they had no understanding at all of what Sickle Cell Disease was.
The young couple also say they did not know whether there was any importance in testing their genotypes before falling in love.
“We live near this area. When we heard loud music, we wondered what was happening there and said we had to come and see,” says Isack.
Loveness adds, “You know, we are small-scale traders and we were not here yesterday, so today when we heard the music, that is why we decided to come closer.
“Since we live nearby and the MC was making announcements, we were encouraged to come. When we saw that screening was taking place, we said it was a good thing, so why shouldn’t we get tested?”
Together, they say the warm reception they received from the health professionals also attracted them and encouraged them to have their status checked.
Yusuph and Loveness say, “It has now been two months since we started living together.
“So, from the way they explained it to us, if we had that gene, it would mean that we could have a child with the disease,” says Loveness.
She adds, “We had never known or even heard about Sickle Cell Disease.”
VILLAGE BY VILLAGE
Chalinze District Council is now being directed to take further steps to reach communities from one village to another, providing accurate information about Sickle Cell Disease and preliminary genetic screening.
This will help identify people with the disease early and ensure they are quickly referred to hospitals for appropriate care, thereby saving lives.
“The Government has strengthened health services. Even here where we are, you can see that we have been provided with Kiwangwa Health Centre; previously, there was only a dispensary.”
Chalinze District Council Chairman Leon Mgweno says this while representing the Minister of State in the President’s Office, Public Service Management and Good Governance, and Chalinze Member of Parliament, Ridhiwani Kikwete.
Leon directs the District Medical Officer to establish a proper arrangement that will enable health professionals to go to villages and identify people with the disease.
“The statistics show that 399 people have been identified in our Chalinze. Director and DMO, I instruct you: regarding this identification or screening, prepare a proper arrangement.
“Our council is capable of saying that every two weeks, we set aside three days, three days for each ward, and take this service closer to the people.
“They should go, receive screening and get their results. We in Chalinze can do this. Prepare the arrangement and communicate with the Ministry and Regional team,” he orders.
Mgweno emphasises, “If facilitation is needed, as the Chairman… we are capable. I will do that to ensure the service reaches the people there [in the communities], so that we can plan properly and understand the extent of the problem.
“It may be that there are people out there … because with Sickle Cell Disease, a person develops anaemia, and in rural areas we may believe in superstitions that now a traditional healer is going to treat it.
“... that someone is eating the child’s blood. There is something, I don’t know what, causing this, and other things like that.
“When in fact, it is simply a matter of getting tested and knowing, then life continues as normal. My sister there [the SCDPCT Executive Director], when you look at how she shines, she is doing perfectly well.
“But when someone hears ‘Sickle Cell Disease’, they imagine it is something of a certain kind, when in fact you may not have Sickle Cell Disease and may have other illnesses. These are normal things,” he says.
FURTHER ACTION
Kiwangwa Ward Councillor Malota Kwaga urges the management of Kiwangwa Health Centre to ensure that it properly collects and maintains data on patients with Sickle Cell Disease so that the information can help in developing effective plans.
SCDPCT Executive Director Arafa Said says the organisation’s main objective during the commemoration was to spread Sickle Cell Disease awareness and enable people to know their genetic status.
“Also, to provide the public with education on nutrition, diabetes screening, blood pressure, height and weight, and there were also people who turned up to donate blood voluntarily.
“We also intend to obtain one Gazelle Machine, which we will bring here to Kiwangwa Health Centre so that we can continue working closely with the Government to bring services closer to the people.
“Therefore, we continue to call on various development stakeholders to support us in this,” she appeals.
The plan also aims to strengthen outreach services so that education, awareness and Sickle Cell Disease screening can reach people in various parts of Chalinze,
.., particularly communities that have not yet been adequately reached with services and information about Sickle Cell Disease.
In addition, SCDPCT is calling on the Government and stakeholders to continue working together to enable children living with Sickle Cell Disease to obtain health insurance, in order to reduce the burden of healthcare costs and enable them to access the services they need on time.
She calls on the community to abandon misconceptions about Sickle Cell Disease and seek accurate information from health professionals.
“A person living with Sickle Cell Disease has the same ability and rights as those without the disease, including the right to study, work and even build a family and contribute to the development of society and the nation,” she emphasises.
The Chalinze District Medical Officer, Dr Theopister Joseph, says the event organised by SCDPCT has been unique and beneficial to the community.
“I assure you, Honourable Guest of Honour, together with my fellow officials, we will prepare the plan you directed us to implement to reach communities and conduct Sickle Cell Disease screening and education.”
Yusuph and Loveness, together, the engaged couple, have a message for other young people across the country.
“It is important to visit health facilities early, before entering into a relationship, to receive education about Sickle Cell Disease and undergo genetic status testing.”
Chapisha Maoni