Ikubese’s emotional film Mzigo premieres in Lagos

Poised to change the narrative around sickle cell anemia, former ‘Mr Nigeria’ turned actor‐filmmaker, Emmanuel Ikubese has spearheaded a project entitled the Mzigo Project, which culminates among other things in the production of the film Mzigo (The Burden), a powerful piece of cinema advocacy focusing on the condition of Sickle Cell Disease (SCD).
The movie, which features a pan-African cast, including Daniel Etim Effiong, Seun Ajayi, and Tanzanian star Elizabeth Michael, aims to raise awareness about the disease and inspire hope within the sickle cell community.
Ikubese’s passion for creating awareness about sickle cell anemia stems from a personal experience – the loss of his cousin to the disease in 2020. This tragic event sparked a desire to combat the stigma, myths, and silence surrounding the condition.
Mzigo, a Swahili word for burden, takes as its core theme the “burden” of living with sickle cell disease, not just the physical pain but the social, psychological and familial weight tied to the condition.
Speaking at the private screening in Lekki, Lagos, Ikubuese who played a dual role in the movie production — co-producer and lead actor — said that film production is part of a multimedia campaign to dismantle the public stigma and widespread ignorance that often surrounds those living with sickle cell, bringing it to mainstream media and inspire hope within the community.
He added that the film has premiered in festivals both local and international, as it was nominated for an award in one of the film festivals in Abuja, and screened at the Zanzibar International Film Festival in Tanzania.
“The purpose of this private premiere is to basically align with our sponsors and our partners and the Sickle Cell stakeholders in Nigeria; bring them into what we have made for them as a tool. We also want to showcase the burden of what it feels like living with Sickle Cell, not just the Sickle Cell community but people outside the community.
“The whole idea is to take it into the film space via film festivals. We screened at Zanzibar International Film Festival in Tanzania and a couple of festivals in the United States as well. One of the things I want people to get from this film is that it is a tool to advocate for Sickle Cell; changing the false narratives, the myths, the very ignorance that people have about Sickle Cell.
“I have seen how impactful that has been in helping us change the narrative around HIV and AIDS. Using all of that experience, going to 12, 13 years, I just felt like this is one disease that has been swept under the carpet,” Ikubuese said.
“I feel like Sickle Cell almost feels like there is a big elephant in the room and no one is talking about it, and the stigma doesn’t even add up. I wanted to use this film to show people what it feels like to live with Sickle Cell. The burden it has not just on the person who has Sickle Cell, but on the entire family system and the entire life,” Ikubuese enthused.
“A lot of times, people don’t understand that storytelling is such a great tool to bring people into a world. And I want to bring people into the world of what it feels like living with Sickle Cell day-to-day from a caregiver perspective,” the co-producer cum director added.
Also speaking at the premiere, Dr. Benson Uzoma, Head Patient Programs, Novartis Sub-Saharan Africa, a healthcare service provider with focus on improving health by delivering innovative medicines and using sustainable business models to address major disease burdens in the region, described Mzigo as innovative way to share the story of sickle cell disease, a foremost genetic diseases in the world with highest burden in Nigeria.
He said, “The idea is that we want to drive awareness. Research we have done with the sickle cell community shows us that one of the major gaps they have identified is lack of awareness. So when we see an initiative that creates an innovative way to communicate the realities of sickle cell disease, we are excited to be a part of it.
“That is why today we are working together with Emmanuel Ikubuese to showcase this movie as a way to send out the realities of sickle cell disease using media. Media is the best way to drive disease awareness. So this is a great opportunity and I’m hopeful that the media will also jump on the bus with us to push out the information on sickle cell disease.”
For Abayomi Ndulami, Communication Officer for Sickle Cell Advocacy and Management Initiative (SAMI), a non-profit, non-governmental organisation based in Lagos, that supports people living with Sickle Cell and also create awareness and public health advocacy around ailment, the NGO part of the Mzigo project because it’s a frontline project for the organisation.
He noted that SAMI has somebody who has lived for 94 years with Sickle Cell. “She is the oldest person that lived with Sickle Cell in Nigeria. We have people in their 50s, 60s, 70s, and 80s. I’m in my 40s. So, the issue of they not living long is already out there. People live long, do well, and reach the top most of their careers.
“Like we know Adekunle Gold is a Sickle Cell himself, and he has come publicly with it. He partners with us in SAMI. We interface with medical doctors, hematologists, who are specialists in most of the hospitals around. We engage in counseling, especially for parents who are facing challenges. We advise them on what they should give to the child who is a sickle cell carrier, and what they should not give to them,” Ndulami said.