By Veronica Mrema
“ I know about that sickle cell disease. It is a type of blood deficiency. I have seen a neighbour’s child suffering from it. But honestly, I do not know what causes it.”
This was a statement from one of the residents, identified by a single name, Mariam Jumanne, a resident of Msanga in Kisarawe, Pwani Region.
In Pwani, as in several other parts of Tanzania, there is a significant number of people living with sickle cell disease.
Sickle Cell Disease is among the non-communicable diseases (NCDs) that are rapidly gaining attention globally.
The World Health Organization (WHO) has been urging countries to take additional measures to address NCDs in order to save lives.
It is in this context that a special outreach camp offering eye care, dental services, body weight screening, sickle cell screening, and nutrition counseling was conducted in Msanga, Kisarawe.
The Sickle Cell Patient Community of Tanzania [SCDPCT] collaborated with Serenox Africa to provide education on sickle cell disease as well as initial screening services.
The camp was organized by Tanzania Health Opportunities (THO) on June 5 this year. Community response was strong, with more than 200 people turning up for health screening and counseling services.
More than 10 children were screened for the sickle cell trait, and four of them were found to be affected.
However, despite the large turnout, not many residents were willing to undergo screening themselves, and some were even reluctant to have their children tested.
This situation clearly indicates that more efforts are needed to address the disease in the community.
According to data from the Ministry of Health, about 15%–20% of people do not know their genetic status, increasing the risk of children being born with sickle cell disease [SCD].
“We identified three major issues during this camp, and our assessment shows that we still have a lot of work to do in supporting the community,”
.., said Dr. Mizinga Moonze, Clinical Manager at Serinox Africa, in an exclusive interview with M24 TANZANIA.
She said the first positive finding is that awareness of sickle cell disease has improved within the community.
“Many people now know it as a blood deficiency condition, which means awareness efforts have reached them to some extent,” he said.
“However, there is still a knowledge gap in terms of how to properly manage the disease and prevent complications. Many people do not know how to manage it effectively.”
She added that awareness alone is not enough if it is not matched with proper understanding of long-term disease management to prevent an increase in cases.
Another key issue identified was that some parents and caregivers of children living with sickle cell disease do not understand how to monitor complications associated with the condition.
“For example, they do not know what to do to protect a child from complications such as malnutrition and poor growth,” he said.
A local resident, Hezron Benson, said the community still faces challenges in understanding the disease.
“I personally know about it because a relative’s child is living with sickle cell disease, and I also came here to get tested so that I can know my status,” he said.
Dr. Mizinga stressed the importance of shifting focus from general awareness to long-term disease management.
“…including medical follow-up and proper nutrition for patients,” she emphasized.
She also noted a gender gap in participation, with fewer men engaging in awareness activities compared to women.
“Most of those coming to our desks are women. When you invite men to learn, they show little interest—they either walk away or ignore the sessions,” she said.
“This shows a significant gender gap in the fight against the disease.” She added that sickle cell disease affects entire families and therefore requires collective participation.
“Women have shown more concern and involvement, especially in caring for children and managing medication and nutrition at home,” he said.
“Women care a lot, but they still need more education. They are the ones who monitor medication and nutrition at home.”
Dr. Mizinga emphasized the need to further empower women in health management roles.
The third challenge identified was fear and lack of understanding regarding the difference between screening and diagnostic testing.
“Some community members fear testing due to misconceptions that they may discover unwanted conditions, or they fear needles,” he said.
“…others believe that if they were not tested as children, they should not be tested now.”
She stressed that early screening is essential, especially for young people preparing for marriage and starting families.
She added that there is a need for continued education to clarify the difference between screening and diagnostic tests, in order to reduce confusion within the community.
Despite these challenges, there is optimism as communities continue to respond positively to awareness campaigns.
“Our future programs will build on the experience we gained in Msanga, Kisarawe, to improve communication, reduce myths, and increase community understanding,” she said.
“We need to eliminate misconceptions and ensure people understand that management is key. Sickle cell is not a death sentence. There is hope,” Dr. Mizinga emphasized.
Chapisha Maoni